It's really too bad travelling is so hard on you. I'm hoping soon you might be able to spend more time siting up! You are much more an expert on POTS/ME centers that I am, I have my fingers crossed for you. If you could make it to Utah I think it might be great!
I agree with you on the muscle biopsy. They will likely find nothing, or if they find something then what? That has to be so frustrating for you.
How are feeling today? Today my body is cooperating so I'm actually getting some stuff done for once.
I'm doing ok ish today. I found a cannabis strain that is helping more than usual. Last night my husband was up in the middle of the night and gave me a baclofen. This helped me be able to get out of bed in the morning with less pain. That's a huge plus. I may set an alarm and take this a couple of hours before I get up in the morning.
I also was standing for 10-15 minutes straight today and didn't hit over 100 bpm. I had to take a 3 hour nap after but maybe that's progress.
Despite the pain spike I am consistently getting more upright time. It's a few minutes right now but it's something.
Yes the whole aspect of these illnesses I have is extremely frustrating. I am my own doctor right now but I seem to be making some progress.
Fun fact: There are about a dozen known auto immune anti bodies in POTS patients (not everyone of course but they are finding all kinds of autoimmunity markers) There's lot of odd auto immunity anti bodies in ME patients too (including auto immune anti bodies in acetyl choline receptors) SFN has been found in about 50% of ME and 50-80% in POTS patients. Similar stats for fibro patients as well.This could explain the autonomic dysfunction, or at least part of it. Lots of potsies also complain of widespread often times excruciating pain, especially in a flare/after a syncope event.
Unfortunately, there is basically no funding for these diseases and most medical professionals dismiss patients despite decades of research proving real biomedical causes for many of the symptoms.