On the Soapbox: Fibromyalgia

16 January 2008 at 2:10 pm (Randomness) (, , , , , )

Warning: No crafting content here, but perhaps some frothing at the mouth.

 I can’t even begin to say how much it irritates me that another round of Fibromyalgia-denial has begun.  What’s a bit odd is that they are using the US FDA’s approval of a drug to treat fibro (which was months ago) as their excuse to start attacking it (and by extension, us) again.  It’s the same old tired refrain: there’s no test for it so it can’t be real.  Even one of the docs who invented the current diagnostic guidelines (the closest thing to a test we have) has recanted and said he no longer believes in it.  (See this NY Times article for what’s being said.)

HELLO, smug doctors of the world!  In the seven years I’ve had a fibro diagnosis (admittedly, my diagnosis is weak: it may be chronic fatigue syndrome instead and anyway it’s not my primary illness) the advances in diagnostics have been impressive.  No, we don’t have a foolproof test yet, but there *are* biological markers in the majority of patients.  Plus, chronic myofascial pain (closely related to fibro) has been discovered to be discernible on a special MRI, thus making it “real” in the eyes of these same doctors.

I suppose the real problem is that most of the docs who did believe in it are rheumatologists, but recently it has been shown that fibromyalgia is a neurological condition.  This baffles the rheumies, but the neuros aren’t up to speed yet.  In any case, the FDA is on board and Pfizer is plastering the airways with “public service announcements” (read: sly ads for Lyrica, the approved drug), so public opinion is  swinging our way.

But this just goes to show that doctors are not infallible.  Indeed, far too many of them have sticks up their bum.  And that it’s sooooo very important to find a doctor that believes both in you and in your diagnoses.  While the NHS here in the UK has no trouble with fibromyalgia, I know there are some GPs who are still resistant.  I’m blessed that I don’t have one of those!  I’m also lucky because Lyrica (pregabalin as it is known here, which is the generic name) is *not* yet approved for the treatment of fibromyalgia here, but my neurologist gave it to me anyway for the neuropathic pain that may or may not be fibro-related.  So I get the benefit of the meds without having to wait for more drug trials, etc.  Maybe that’s just reason number one million and four why the NHS rocks my world.  Sure, you have to be a patient patient as waiting lists can be a pain, but it’s better healthcare than I ever had in the US (and I had health insurance and HMOs that were supposedly the best healthcare money could buy).

I’m going to get off my soapbox now and maybe go photograph some hats. 🙂 

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1 Comment

  1. Zipper said,

    Oh! Great job!
    Very good and useful post.
    I add your interesting blog in my Netvibes page!
    We’ll expect many new interesting posts from you 😉

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