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pipistrelle

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Everything posted by pipistrelle

  1. I saw something which explained why air travel is bad for people with dysautonomia and exacerbates symptoms (very very dry/dehydrating, pressure changes, blood pooling etc) but I was wondering if anyone else experiences the same thing with car travel? My family has always gone on long road trips to see my grandparents (12-14 hours) and as I have gotten sicker I've noticed that I absolutely cannot tolerate these trips any more. They make me like 5 times as symptomatic or something (and make my fibro pain about twice as bad as well...) Anyone else have trouble tolerating road trips? I was in a fair amount of discomfort until about hour 6 at which point it became ACUTE discomfort and an hour later I felt so awful I could no longer stay in the car so we had to stop for the night. This even with stops to walk around and stretch my legs and get fresh air etc. :/ Are there any methods of travel that DON'T have a really bad effect on dysautonomia symptoms???
  2. I got my first bout of extreme dysautonomia symptoms which made me extremely ill along with an outbreak of shingles when I was in my early 20s. Not the first time I had chicken pox, but same virus? Dunno.
  3. Vitamin D helps your body absorb calcium which I imagine was what the Dr was talking about re: bones and teeth? I've been vitamin D deficient and taking supplements for years now. When I'm taking them it's normal but whenever I go off it dips back down into superlow.
  4. I live in Philly & have a friend who has dysautonomia and EDS who lives in Pittsburgh... Neither of those are really the area you mean, though, I think.
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