Pineapple

Thank you for your responses! I do need to work on exercises, for sure. I have been trying to move and get up briefly, but I know it hasn't been enough. It's a good reminder to do what I can in bed and not give up. I tend to lose heart a bit, with feeling so weak and yucky, which I'm sure everyone on the forum can relate to. I will ask about IV fluids. I struggle even when I'm at my healthiest to stay hydrated, so that would make sense to see if that helps. I have seen 3 rheumatologists and had lots of inconclusive testing, and am now on my 4th endocrinologist (due to insurance) who is treating me for Hashimoto's. I also have a hematologist; maybe he would refer me for fluids if I asked? I will reach out. Thank you again for responding- I really appreciate it.💗

I have had dysautonomia for 8 years now with a huge variety of symptoms coming and going. One new one as of the last year that I am wondering if anyone else is experiencing, is that when I get a virus, my body can't seem to do things like make a fever or expel mucus. Near the start of a virus, I can feel my body revving like a car, trying to heat up, it seems; I get the feeling it's trying unsuccessfully to create a fever. Then once I get into the mucous stage, I can't cough, make a runny nose, etc. I can feel it in there, but it's like my body has just given up on any response to it. I've tried neti pots, and that does work to flush stuff out, but I've ended up with really horrific ear infections every time. I can't sweat, so in my mind it makes sense that perhaps I can't thin mucous out enough to drain it, but I'm not a specialist, and when I asked my only doctor with experience in dysautonomia, he said, "Hmm, I don't know." I'm trying mucinex, steaming, etc. etc. but nothing is really working. Thoughts? Just curious if anyone else has experienced similar things. I'm on day 28 in bed after my 4th bout with Covid; just can't seem to kick it.

I won't be medically helpful here, but I want you to know you are not alone, and you are not crazy. I have experienced a very small bit of the feeling you describe in my dysautonomia journey of the last 8 years- where suddenly I'm just not breathing, as if my body just forgot, and I have to purposefully draw breath. For me this ususally doesn't last more than a few seconds, and it has not been nearly as extreme as what you describe. It must be terrifying. I am so sorry you are going through this. Just know, you are NOT alone. 💗