Anyway the appointment with the rheumatologist went about as well as could be expected!!
She is an expert on fibromyalgia so initially she really focused on that. She has some ideas for additional meds and other treatments that may reduce my pain more than what I’m currently doing. She’s sending me to other specialists to handle some of the secondary issues that are bothering me, too. She was also willing to patiently explain some things and answer some questions, which was a HUGE relief.
She also ran some labs just in case I have a certain autoimmune condition that’s lupus-adjacent but since my lupus labs came back neg in 2018 I probably don’t have to worry about that. She was confused about all my autoimmune symptoms paired with negative R.A. and lupus labs and I think it’s because she doesn’t know M.E. is autoimmune. I left her with the journal article establishing the International Consensus Criteria. Hopefully she’ll read it.
She says she really doesn’t know much about M.E. and she’d never heard of adaptive pacing, BUT she also said she’ll do some reading on it and that I should send her what info I have, so I’m trying to find some good journal articles that focus on the pacing.
I’m beginning to think there really isn’t anything in the literature connecting pacing and the anaerobic threshold, which is what I’m really interested in working with, so I may end up sending her the article I found demonstrating the formula for finding an M.E. patient’s anaerobic threshold and maybe something showing that nobody in general should go past that since I guess it’s common knowledge in general medicine.
OH! and she recommended some types of exercise and my gf googled them and they’re basically what I’ve been trying to do already, except there are sitting/standing components which I’m going to skip for now to avoid spiking my HR while I get stronger.
SO overall I’m optimistic!!
I really need to get a heart rate monitor though, it’s awkward using the pulse oximeter when I’m like cooking etc when I really need to watch my heartrate and my gf does actually need to use her fitbit even though she generously lent it to me for a few days to get more data.
