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About lamp_girl

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  1. I'm thinking specifically Sjorgen's, but happy to hear about others too-- does the autoimmune disease mean you have an easier time treating the underlying POTS? Did it make the POTS symptoms more progressive?
  2. Just had my period for the first time in a while, and was just completely wiped out for about a week. I'm new to POTS so haven't had a real "flare" yet outside of this, and I'm curious what to expect-- do people with bad periods feel like they're worse than other flares, better, or about the same?
  3. lamp_girl

    Random pains in extremities/legs/face?

    I haven't! I wonder if it could be some electrolyte-type issues? I also had restless leg issues/muscle cramps for a while that went away when I took iron supplements-- maybe you should try that and let me know if any of your issues go away? Sometimes I have extremity pain that also gets better with warmth, so I wonder if part of the pain is circulation issues. It's encouraging to know that other people have this too. How long has this been going on for you? Let me know if you ever figure out what it is!
  4. Wondering if I have gastroparesis-- definitely have a lot of motility issues, but it seems to happen when I'm otherwise super symptomatic with POTS issues. Does that mean it's likely or unlikely to be gastroparesis? Anything more POTS-related that would cause delayed motility type stuff?
  5. I often get these random, very short duration pains in various parts of my body-- often my fingers, but sometimes I also get soreness-type pain in my face or legs. They don't really go away when I lie down, but I feel like they are worse in the evening. They're not very painful but feel worrying-- is it a POTS thing? Could this be something like fibromyalgia or small fiber neuropathy?
  6. I've done a few saline infusions over the course of ~1 hr, and they have been somewhat helpful-- I'm wondering if doing them slower would be better. I don't have a bad reaction to getting all that fluid in over just an hour, but am wondering if doing it over a longer period of time would make me feel ebtter.
  7. Hi! I'm new with POTS, and have been having weird new symptoms recently (it might be because I'm on my period). I'll wake up in the morning feeling mostly okay, then when I walk around/am upright for a while, I'll get hit within this intense sleepiness (though I still can't fall asleep under it). After something like an hour, if I sit up, it'll go away, to be replaced with an unpleasant headache (I kind of feel like I'm still tired in the background). Has anyone had a similar experience/found things that helped them? I took some modafinil today and I don't think it did much. The day I got a saline infusion + took it easy the sleepiness didn't seem to happen, so I'm pretty sure this is POTS related. Related question: is this "fatigue" or is it just "sleepiness" because I'm just sleepy rather than my body feeling heavy? Does anyone experience sleepiness but not fatigue?