On Friday I have an appointment with my doctor. The last time I saw her she mentioned that the next time would include a fasting blood test (it's time to check my A1C and cholesterol). I remembered some folks having talked about fibromyalgia-related topics, including blood work, that I'd meant to ask her about, but could not remember everything. Since then I've been meaning to ask y'all for stuff to write down before the next appointment, and, well, forgetting to do that.
So, apart from the obvious ("What should I know about Lyrica, is it likely to work for me despite the categories of drugs I have adverse reactions to, and is it covered by the state insurance?"), what should I write down in my PDA for Friday? What tests for factors that make fibromyalgia worse, what tests for things that can be misdiagnosed as fibromyalgia? (I'm pretty sure what I've got is really fibromyalgia -- a couple of the rheumatologists I saw early on (wow, has it really been fourteen years already?) were very highly spoken of by other rheumatologists -- but hey, if by some miracle it should turn out that I really have something curable instead, who am I to turn down the fairy-tale ending, eh?) I know to ask her to check my vitamin D level ... and, uh, thyroid?? She said they already check potassium pretty much every time they draw blood (I was going to ask for that to try to figure out why the muscles in my legs are giving me so much grief).
Of course, this is a message that I want to have make sense, and I'm quite the other end of the scale from being optimally awake right now, because my sleep pattern lately doesn't seem to have much pattern in it (I did get a longish chunk of sleep Monday evening -- I fell asleep in the middle of composing email to find out whether I had a ride to rehearsal, and woke in the wee hours, mail not yet sent -- but then I was up for a really long time and only managed to stay asleep for ninety minutes when I finally managed to crash again). And yes, I'll sift through alt.med.fibromyalgia later as well, as much of it as I have the attention span for when I get to it.
Anyhow, my memory being even more fragmented than usual (are there Norton Utilities for wetware?), please help me remember what I'd been planning to ask my doctor about now that she's finally acting like she's willing to work with me on this instead of just pushing me through the standard patient checklist.
Next week I need to get my wrist X-rayed -- I have to ask my doctor for the radiology referral -- for the orthopedist appointment on the first.
The other thing on today's agenda is to try to convince myself I have the spoons to make it to the grocery store and back, and count up the contents of the bag o' quarters to see how much of the urgent-list I can afford to pick up. It's that kind of month. (Running out of cheese, bread, coffee, and toilet paper does not sound like a winning option.) Oh, and I need to get around to putting a copy of Wolgemut Live In Concert Pennsic XXXV up on eBay. I need to put the opened copy into a computer or a CD player to check how long it is first, because that's something that probably ought to go in the eBay listing.
I hope I've got the paragraphs in a sensible order. While I'm glad that some people at least find my addled-by-non-sleep writing entertaining, it does feel like more work keeping things more-or-less linear when I've been awake too long. Things start rearranging themselves (paragraphs, words, keys, furniture, buldings) somewhere between eyes and brain, or between perception and short-term storage, or between something and so-... waitaminute, maybe it's the things that other things get lost between that are getting shuffled. No, no, that would mean storing memories in my corneas, thinking with my eyelids, and having a photosensitive cerebral cortex doing the raw image-capture, so that can't be right.
Might have to postpone hiking to the store and just hope I can stretch what I've got (am already out of coffee but do have a few decaf Earl Grey teabags left) until a better time to trek. Probably wind up tromping through tomorrow's predicted "wintry mix" though. But I don't need the sidewalk and a car trading places when I blink. Or to have the streets change direction and accidentally walk off into a parallel universe. (All roads lead to Amber, right? The description of the shifting landscape in the first walk described in that series did make me think of how this brainstate feels.)
Oh. I'm digressing again, huh?
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Have your doctors tried Cymbalta for you? I was already taking it for depression, so they boosted the dosage -- it's commonly prescribed for Diabetic neuropathic pain, and being used experimentally for fibro. I think it is helping.
Have the doc check your levels of B12, and CRP (C-reactive proteins). Apparently elevated CRP is pretty common in fibro patients, and can be controlled with daily aspirin, which also helps with the pain.
*hugs*
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B12 and CRP added to the list. Thanks.
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Tricyclics made me depressed. Effexor made me depressed. Welbutrin took me all the way to despair. Those drugs have saved a lot of lives, and made many more lives worth living again, but they're apparently poison to me. And Klonopin made me into an ugly rage-fiend, losing my temper, punching holes in walls -- I reverted to the me you recognize after I got off it, but the summer I was on it I really thought I was losing my mind.
In contrast, the muscle relaxant and the Neurontin just made me wake up feeling hung-over every morning, or wake up with the taste of stale coffee grounds in my mouth every morning (I've forgotten which did which). The doctor who prescribed the one with the coffee grounds effect said that symptom meant that I was at the highest safe dose for me, and it wasn't helping enough at that dose, so there went that one.
So an anti-seizure drug has me a bit cautious. I really want to talk to a major-league brain-chemistry expert about it, but I don't know how likely that is to happen, nor whether the way Lyrica works is well enough understood yet to be able to assess the likelihood of it screwing up my neurons like these other drugs.
I think I can picture you manic -- no, no, really I guess I can picture you hypomanic and kindasorta extrapolate a little, not the same -- and yeah, I can see all sorts of scary-potential there.
"Brain chemistry is scary stuff and our work with it is experimental at best. I'm glad you survived the experience, though I wish you hadn't had to go through that!"
Yup. (Wish-I-hadn't-had-to-go-through-that but glad I survived it is how I feel too.) Thing is, doctors at the clinic level who don't realize -- or just too easily forget -- that even with the brain-drugs we understand best there's a lot of potential for scary atypical reactions, they make things all the more dangerous. The meds work just well enough often enough for people to forget how scary tinkering with the brain at that level is.
And of course there's always the annoyance of a doctor who hasn't bothered to read the PDR far enough to see the warning about paradoxical reactions and doesn't trust a patient's ability to observe her own state, and thus insists that the drug can't be causing the depression and obviously you just need a higher dose. (Fortunately I didn't encounter that issue with the Welbutrin.)
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