Well, I suppose it was good news today.
I went to a regularly scheduled doctor visit, back to my GP for follow up questions that were left unanswered from the last rheumatology appointment. I'm starting to feel a little bit like I'm in the middle of a tug of war between two strong personalities who both think that their version of what autoimmune disease is all about is correct, yet neither agrees with the other on all of the key components. When last I was at rheumatology, I repeated my complaints about certain muscle pains, and the specialist told me in relation to those, "That's not lupus." After she insisted this a couple or three times, I asked her, "Do I need to go back to my primary care doc and ask her about an overlapping condition like fibromyalgia?" She practically rolled her eyes when she said, "Yeah."
So back I went to my PCM. I told her about this interchange. This one actually did the eye rolling and said, "Rheumatology can diagnose fibromyalgia. That's what they do." But as we delved deeper into the conversation, she said these things absolutely were lupus, and she scolded me for using the "F word." She insisted that fibro is what they diagnose when you're having all the pain of lupus without the positive blood work. So now I'm back at square one. I still have a ton of pain, and I have no new way of managing it. While today's doc was at it, she also suggested I skip a few doses of one of the main meds to treat lupus, to see whether it is to blame for my serious problems with dizziness when I stand up. (I don't think it is. I had this so badly a couple years ago that they sent me for an MRI of my head, with no obvious source from there.) She also said that I could be having rebound pain from the anti-inflammatories, and maybe I should cut those out too, and just use Tylenol "when you just can't stand the pain anymore." Well, crap. Apparently decades of having my feet hurt so badly 24/7 that I can't stand, sit, or sleep is not enough. Coach says I just have to rub a little dirt on them and get back in the game.
I did press a little harder to ask about my complete inability to sweat, and how it is making it impossible to sleep, because I feel like I'm being microwaved. She pulled up my test results from the major bloodletting back in February, and said I had positive markers for Sjogren's syndrome, and brief googling this afternoon backs her up on that one. At least one mystery is solved. Not treated, per se, but identified.
So I am not to say that I have fibromyalgia. Okay. I don't get to ask about adding a little Lyrica into my repertoire to treat pain. Okay. I may need to stop taking the medications that finally seemed to be taking some of the worst of the lupus symptoms away (namely the things affecting my cognitive abilities). Okay. I was told that decades of just plugging along pretending things didn't hurt as badly as they do was probably best for me, because if I'd been diagnosed many years ago, they probably would have shoved so much prednisone down my throat it would have wrecked my joints and I'd have two knee replacements by now. Okay. So now what? Seriously. Now what?
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