Fibro blood test

Even if there's a test for it that's not going to make us feel better. Just good for insurance cases.

Barb

I'm brand new on the forum, and I'm wondering why this blood test isn't more widely known and discussed. I was given a kind of half-hearted fibromyalgia diagnosis by my former family medicine doctor in about 2006, but I just managed the condition on my own before and since. By managed, I mean that I try to get the rest I need, try not to overtax myself, and just live with the symptoms. Painkillers don't do anything, so I don't take them. And doctors, I find, are worse than useless with conditions like this.

But recently, due to misplanning, I recently found myself with flexible spending money that I needed to use or lose, so I looked online to see what's available for testing for fibromyalgia and learned all about the fm/a blood test. I'm aware that it's controversial, but it sounded reasonable to me as I read about it, so I decided it was worth it to go ahead and get it. The fact that many insurance companies cover it, including medi-cal, gave it some more legitimacy in my eyes. So I went to an alternative MD that I had seen in the past for my thyroid, and asked him if he could order it for me. I got it and the results were a very strong positive. A score of 50 to 100 is considered positive, and my score was 94. For a few reasons, I was glad to at least get a confirmed diagnosis. It's also helpful to know that there seems to be a genetic basis for the disease and that, if needed, my kids can be tested for the gene pattern sometime in the future.

Before I did the test, though, I searched online forums like this one, expecting there to be lots of discussions about the test and lots of people who had it done, and I was so surprised that the discussions were few and almost no one has had the test done--even since insurance companies started covering it. And I wonder why that is. If nothing else, aren't people curious?

Well I guess that makes sense if you're already quite sure that fibromyalgia is what you have. But for those who are still speculating, like I was, it made more sense to have a test to confirm the diagnosis rather than a bunch of tests to rule out other diagnoses. Now that it's covered by insurance, that is.

I actually decided to go ahead and participate in the genome study they're conducting. I don't really have any expectations that it will necessarily yield any results that will directly benefit me, but who knows, maybe it will eventually be of some benefit to someone.

Okay, I see your point there. You want to make sure to diagnose the progressive and treatable illnesses before settling on the fibromyalgia explanation as the only one, since those could cause more problems if they're not treated. Makes sense.

I initially went to a DO who really wanted to do some Lyme testing because of one particular high inflammatory marker I had, but the tests, as I understood them, weren't reliable enough to give me confidence and, anyway, I considered Lyme highly unlikely. I later, for other reasons, self-diagnosed as probable LADA, and then confirmed it with the endocrinologist, but no one would have tested me for that if I hadn't asked for it. And especially not my Family Medicine doctor! The same thing with my hypothyroid. I had raging symptoms, but the labs weren't convincing enough to my doctor, regardless of the symptoms. That's why I first started going to an alternative DO, and later her partner, an MD. I never did find out what caused some of the abnormal test markers that were originally found by the DO who thought I had lyme, but I retested for those recently and they were normal, so I'm not worried about them.

There's just so much that isn't known, and so much that supposedly is "known" but will eventually be overturned. Frustrating, but when I or my family members aren't well, I tend to go into sleuth mode and it sometimes proves valuable.