this post was submitted on 26 Jun 2023
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Disability and Accessibility

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"Our study finds that 67% of individuals with Long COVID are developing dysautonomia. That’s an estimated 38 million Americans with Long COVID dysautonomia, and millions more around the world,” says Lauren Stiles, President of Dysautonomia International and Research Assistant Professor of Neurology at Stony Brook University.

"We need the National Institutes of Health to immediately address this crisis and begin funding research aimed at developing effective treatments for Long COVID dysautonomia,” says Jacqueline Rutter, a Dysautonomia International Board Member whose family has been impacted by Long COVID.

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[–] [email protected] 2 points 1 year ago (1 children)

what exactly are the symptoms?

[–] [email protected] 4 points 1 year ago* (last edited 1 year ago) (1 children)
  • hypohidrosis: lack of (significant) sweating (I overheat easily)
  • POTS: I get out of breath if my heart rate rises too high, I would say it has a higher baseline just from going from laying to standing (thus easily pushed high from anything aerobic, or physical things that shouldn't be aerobic). Also blood pooling in feet if salt is too low
  • EDS: probably more of a cause/related thing (and not too severe/frequent for me), but if I move the wrong way I have partial dislocations. This is a collagen issue so I imagine it's probably generally not good physiologically (I'm in the dark with it) because it's a vital material in your body
  • sleep: I don't really sleep well (also have poor quality dreams if much at all, though that might be related to aphantasia, but at least I don't have nightmares like I did when I had more vivid dreams as a child)
  • energy: sluggish, hazy feeling. I suspect this might actually be related to the inner ear (Benign positional vertigo) even if it is mild enough that dizziness is not apparent. Also overlap with diet/activity (though it's consistent despite changes) and depression etc

Also, neck pain commonly and I've had TMJ symptoms (jaw muscle/ear pain) twice.

[–] [email protected] 4 points 1 year ago* (last edited 1 year ago)

Thanks! That sounds terrible, especially now that it's becoming widespread.