Hoosierfan Posted April 13, 2012 Report Share Posted April 13, 2012 Thanks for all the responses noting Adrenal Burnout and the integrative docs. My PCP (who is as frustrated as I am with my sensitivity to meds and my 17 month "experiment" with different meds) is referring me to an integrative doctor within her physician group (she is part of Penn State University Hershey Medical Center) who is an MD but looks you up and down, and works with alternative treatments. Hopefully I'll get into see him soon and then I'll report back. My biggest issue right now is trying to get off the Florinef (hate the side effects), but my adrenals don't seem to be happy about it...... Quote Link to comment Share on other sites More sharing options...
Elfie Posted April 15, 2012 Report Share Posted April 15, 2012 This is a hard one because I am a very fit POTS patient compared to many and never quit exercising or being active and continued to work or go to school. I do faint, but over 5 years I've gotten quite good at compensating and sensing/avoiding faints, at least in public (I find it harder to do at home where I "risk" more to keep my family at a temp they can stand, walk around despite meds being at their lowest, shower, and am more relaxed).That said, I've almost given up on going out and doing things only to spend time with other people or for enjoyment. Standing and going out still makes me sick and it has gotten to the point that I no longer am enjoying myself because I walk around miserable or out of my head the whole time I am out. The cognitive stuff for me kills it, because I have issues processing what I am seeing/experiencing when I am out of it, and therefore am not enjoying things or sensing much of anything. I also can't form opinions or hold a conversation when I've been standing. It is super difficult because no one can see why I'm not enjoying myself and I just seem like I am acting aloof, bored, ect.If you find yourself not enjoying yourself or not wanting to go out or always missing out on things (really hard when you are a young person that shouldn't have to miss out on experiences), I would be tempted to take advantage of aides if it means that you can do more. Quote Link to comment Share on other sites More sharing options...
peregrine Posted April 15, 2012 Report Share Posted April 15, 2012 Regarding needing to sit down while in the middle of shopping, zoo, etc - I have a small portable stool I got from REI that was about $25. It can fit over my shoulder or in the water bottle pocket of my backpack (secured with a strap on the side), so it comes with me everywhere. Takes about 5 seconds to pull out and sit. It's a little uncomfortable for more than 45 minutes of sitting, but still sittable. This means that, on a bad day, if we're waiting in line at the store, coffeeshop, walking around a museum, etc I can just plop it out and sit for a bit, then scooch forward pulling it under me. Definitely one of my favorite things. Quote Link to comment Share on other sites More sharing options...
E246 Posted April 16, 2012 Report Share Posted April 16, 2012 I carry a shooting stick with a feral(sp?) end - not a spike. It means i can sit immediately wherever i am.I don't faint either but frequently use a wheel chair for long distances as being upright causes me so much chest pain and pressure. Sometimes I take both out and use neither. Chest pain is very hard to push through. Getting a balance is good - we all seem to pay for overdoing it. Quote Link to comment Share on other sites More sharing options...
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