Friday, 14 September 2012

Lupus Makes No Sense
There are some things about lupus that make absolutely no sense whatsoever.

One of the things that often gets to me is that when I'm incredibly sick, my blood tests will all look really good.

Just lately, my lupus symptoms have been flaring: I've been suffering from joint pain, horrendous fatigue, brain fog and extreme clumsiness. (And the rash on my thighs is worse than usual.)

The GP sent me for a blood test.  The result? I should be perfectly healthy. All of the indicators for lupus were within the "normal" range. There was nothing in the blood work to indicate my lupus was active at all.

I would have started to think I was crazy, except that other people with lupus tell me they experience the same thing. Sometimes there's a disconnect between what the evidence in the blood tests is showing, and what we're actually experiencing.  (In fact, a proportion of people with lupus just don't ever have positive blood tests. Lupus is so complicated that people can have any number of symptoms, and not have it show up tests at all.)  We don't imagine it, there's just no test that accurately measures how active lupus is, because it does different things at different times.

What could my GP do about my current flare? Well, not a lot. The rheumatologist has so finely balanced my cocktail of drugs, that she's not willing to interfere with it. So she's given me a Vitamin B12 injection (with another to follow next month) to help me deal with the fatigue. We both hope that if I can get over the worst of the fatigue, the other symptoms might start to improve as well.

Apart from that I just get by as best I'm able, knowing that all flares eventually pass.

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