I used to be super-athletic (mostly volleyball and snowboarding) and played a sport almost every day and entered tournaments on weekends.  I missed being so active, so I decided to accommodate the EDS and POTS and I bought a recumbent trike!  Although I haven’t been able to ride for a while, I just wanted to share this everyone as you might want to try it.  I don’t do distance rides, but I ride up and down (up to 5x) an extremely steep and long hill at the Scarborough Bluffs.  Please see the attached pic of the trike.  I thought this might appeal to people because, well, you are sitting down in what feels like a recliner (so little or no POTS) and this particular Catrike has an adjustable head rest, for those of us with severe neck pain.  I feel completely supported and pain-free while riding.  Please note the position of the headrest is REALLY important.  Once, just from changing it’s position back a bit, I could barely pedal on a flat surface.  So, to sum up, IT IS EASIER FOR ME TO RIDE UP AND DOWN AN EXTREMELY LONG & STEEP HILL THEN TO STAND STILL OR WALK!!!! lol Oh, and also I feel REALLY good after riding; like it gets circulation to my head or something. 
...sorry, it won’t let me attach the pic (says it’s more than 75 KB?).

Cool.  Try resizing the picture so it is smaller or save it as a JPEG.  Some file types use up less KB’s.

Cool is RIGHT! I have been considering this for a while. These babies can ZOOM! Mild to moderate exercise can help us because it decreases our inflammatory cytokines. I found the effect to last for about an hour and a half. I would encourage anyone who can still exercise to do so, but not excessively. Our inflammatory cytokines then go UP. Not good. Unfortunately, as is true of many of us, if our hypothalamus and other organs can become affected, it can become almost impossible to exercise. My aim is to avoid us getting there to start with, but if already there, focusing our treatment on regaining vagus nerve function, reducing hydrocephalus, and decreasing the magnification of inflammatory cytokines by getting control of the mast cells that amplify them. Meanwhile, have FUN and Heavens, please watch for speeding vehicles!

Dr. Diana - 17 March 2012 10:36 PM

  Meanwhile, have FUN and Heavens, please watch for speeding vehicles!

I only got out once last year and only a couple of times the year before.  And up to 2008, I was able to snowboard once a year.  Currently, I am unable to ride, but my goal is to get out there on this trike once I have done all of the things you mentioned - regain vagus nerve function, reduce hydrocephalus and regain control of those mast cells!  And yes, a recumbent can be difficult for cars to spot, so if anyone gives it a whirl, make sure you have a flag.  I also make sure I am “positioned” so I can be seen (e.g. leaving LOTS of space if a car is in front of you, so they can see you in their side view mirrors, etc.).

I do weight lifting. I have a lot of videos of it on YouTube. I can’t do it every day but on good days I love it!

sarahdionna - 19 March 2012 08:22 PM

I do weight lifting. I have a lot of videos of it on YouTube. I can’t do it every day but on good days I love it!

That’s great!  Lifting weights relieves a lot of stress.  I had to stop about 7 years ago because my neck pain was just too severe.  I even altered my entire routine, trying not to use my neck muscles, but you use them for almost everything you do.