FarKry

i'm not sure about that, but i have noticed that just recently my body has become extremely sensitive to temperature changes. i used to be able to go out in 30F weather with little to no wind with only a t-shirt on and be just fine. now all of a sudden i step into a cool room and in about 30 minutes i'm freezing. and different parts of my body can be hot while other parts are freezing. it usually happens when i sit down; thats when by body is warm but my feet go numb from cold. and i've started to sit indian style whenever i don't have socks on to keep my feet warm, infact i'm sitting like that right now. you're not a freak. we're all different and each have their own problems, this is just something that makes you special. sweet dreams Tom

its the disease and your own genetics. i'm not sure about that medication, i don't take it. however, i do know that some people that after being awaken by someone or something they can't go back to sleep, yet others turn over and its lights out again. its the difference between being a morning person and being a rock sleeper. the disease is only responsible for being tired the next morning. from what i know this is accurate. but then again i'm wrong sometimes, still, as far as my knowledge carries, this seems to be what's going on.

why don't we call it RCD for a Really Crappy Disorder? its not like it doesn't fit the description, it is quite a pain in the neck. I know its not cancer, but cancer isn't crappy, its a much more serious ordeal. but POTS (or RCD ) has compromised the lifestyle of so many people out there, and we're all extremely upset about the fact that there is no definate cure out there.

its always better to talk about it. i had a rant earlier this week and felt so much better afterwards. the disease for me isn't as bad, but i can understand the passingout part. i sometimes get up and stretch my back and when i do i lose all feeling in my body and fall back... hopefully. i've hit my head and different parts of my body on various things when i lose complete control. thats terrible that you're moving from hawaii. if anything people would want to move to there, not away from it. i feel terrible hearing about this. but just remember, no one thinks you're a parasite. they like you because you are who you are, not what you are. and the friends that you do have left are your true friends, never let them go.

I feel so comfortable here. i only registered 3 days ago and i feel like i've been here for years. the welcome and personnal experiences helped me see that i'm not in this by myself, that thee are others out there. briarrose- yeah, Ken Davis? I've been to see him. He's a great guy and a great doctor. seems to work as well with the mind as Grubb does with the body. and 6 children!? my parents have a hard time with 3 and they don't have POTS. You have earned my respect for sure, my hat is off to you. cnm1- i take class at the HS. when i get home though i usually sit at the computer for a while to keep busy as my body rests a little. I still can't stand to do nothing, even when i'm tired (ironic isn't it?). whats SSI btw? our family income is stable, its just the fact that a lot of things have come up, a bunch have things have broken down and need replacing, so we're extremely tight. d4g7- I keep myself busy. i usually find that sense of accomplishment through excersizing my brain instead of my body. I do have a guitar and play a little every now and then. everyone else thanks again, i feel i can come here and not be judged. and thats extremely relieving

Just to say, I am 19 and male (Hi). I was diagnosed with POTS around age 13 and at the time it was okay with me. sure, i have less endurance and i get tired easily, no big deal. I was wrong. I used to play hockey very cometitivly and i had to give it up when i reached the age of 15. I was a very active person, i loved to move and stay moving, i had to give that up. these days my life is dull. while i do have friends i can spend very little time outside of school with them. i don't have the energy to go out and be able to get up the next day. infact if i don't get to bed by 11 i probably won't wake up the next morning until sometime after 11am. all i really have energy for nowadays is to sit, watch TV, read, eat and sleep. thats a typical day for me. Because of this disease i have to have a shortened scedule at school, and because of that i am still a Senior in high school. I'm supposed to go to college next year. how am i supposed to deal with college when i can barely handle what i have? our family is having trouble with money because i'm on 19 pills a day just to keep me going, and i can't even get a job to help because i won't have any energy for school or anything else. I have kept praying that this is just a nightmare and that i'll wake up. and the possibility that i may be like this the rest of my life is a taboo; i simply don't even want to think about it. I have given up my active lifestyle, but i used to be an active guy, and i still love being active. just sitting drives me crazy. you'd think i'd be over this by now, and as it turns out as i get older and more options open up to me, i can't do anything more because i don't have the energy to do anything else. Dr. Grubb has been a godsend, he has helped me understand my disease and what is possible and what is not (he also taught me how i'm now extremely vulnerable to high elevations, long story short, don't try to cross any continental divides). And as nice of a guy he really is, i wish i never had to meet him. I know we all do but this is getting to be to much for me. I grow more distant from my friends and ever closer to seclusion, i just want it to end! EDIT: I'm starting to feel a bit better, i just really needed to get that out of my system.