Article: Lack Of Exercise As A Medical Condition

[McBlonde]

Maybe it's me. Maybe I need to take a break from the forum, but this multiple threads being started with "Just get up and exercise and you, too, will be Cured!" implied are really getting to me.

[brethor9]

yep me too! I think it really needs to be stressed that POTS is only a syndrome made up of various symptoms. Every patient's ANS is affected differently based on what is underlying and causing the symptoms whether it be viral, MCAS, neuropathy, EDS, autoimmune, familial, etc. therefore every patient's treatment and recovery is going to be different. Age is also a factor....younger patients have a higher recovery rate. The subject of being deconditioned is a touchy subject for the group of us who have been suffering and struggling with these symptoms for many years despite being in good shape and pushing through. I suspect we are also the group that have a secondary illness causing the POTS symptoms. I think it is sad when we the patients start to believe the hype of some of these ignorant doctors pushing these studies

[HopeSprings]

Maybe it's me. Maybe I need to take a break from the forum, but this multiple threads being started with "Just get up and exercise and you, too, will be Cured!" implied are really getting to me.

I feel the same way. It's disheartening.

[Katybug]

I hope that no one leaves the support of this Forum because they are discouraged. There is bad science and bad medicine everywhere. There are very few places where those of us with this syndrome have the support, understanding, and knowledge of others who share our burden. It would be a shame to see my cyber-friends leave and let the "establishment" win on this one. I think about how poorly people diagnosed with CFS or fibromyalgia or IBS were treated 20 years ago, and, I know that the one thing we can hang our hats on is that we are the pioneers for the people in the future who will benefit from our fight for better science and treatment of dysautonomia. But, I worry that that can't happen if we don't stick together and stick to it.

[Anoj]

i am not leaving the forum.

better science ... wouldn't that be nice.

as for CFS, fibromyalgia, et al, i still feel like the medical establishment doesn't take those issues seriously. people seem to be labeled a "kook" if they have these things. several doctors tried to label me as CFS, and i wouldn't let them. i thought it was a lazy thing to do, instead of finding the cause to my problems. now i think dysautonomia was probably involved with a lot of my health problems throughout life. although i would like to find the CAUSE for that.

i just want to say that i am NOT in good shape. i'm friggin fat. was i in good shape before POTS? i didn't work out. but what i did was perform at least 4 times a month, worked events, traveled, played with my kid, etc. etc. i was very active, 140 pounds. post POTS 220 lbs. i blame it on my SSRI (sorry if you've heard this story before). i'm not trying to be defensive, but i worked out for months and months after this diagnosis and did not lose ONE pound! in fact, i kept gaining! i know weight is not the issue in this particular thread, but it's just really depressing to think that anyone in this world could think that i was lazy or deconditioned. and, i got a pretty good lecture from my doctor about losing weight and exercising. "come back in 4 months, and you'll be a completely different person."

sorry, don't mean to drag this discussion out. i guess it's just nice to have a little support coming from somewhere.

[hholmes13]

I totally understand that this is a tough subject. It drove me crazy that no matter how hard I tried to be active, I just couldn't do it. For most of this summer, just trying to go out to the grocery store would make me feel so horrible that I'd be laid up and asleep for a chunk of the day afterward. I'm excited that I'm able to do exercise right now again finally...but I'm not going to count it as a cure all. I feel like I'm just teetering on the edge of a cliff waiting to fall back into a flare up again. (Hoping it won't happen of course!) Sometimes POTS seems to have a mind of its own with regards to how one is feeling. Having EDS makes me wonder that if for me, this will always be at least somewhat of an issue. I mean I can't magically make my collagen not defective. I'm just hoping I can keep it managed well enough to have some semblance of normalcy in my life. At the moment the combo of meds/activity seem to be working, but I just take life a day at a time and enjoy every symptom free moment like it's my last! The problem is doctors like to lump us all together and try to put a one-size fits all bandaid on everyone even though we all have very different presentation of symptoms and possible underlying causes. I agree that activity can be a good thing...but you have to work within what you're dealt.

[Relax86]

I feel like I'm just teetering on the edge of a cliff waiting to fall back into a flare up again.

I fear relapse every day now that I'm about 85-90% better. I don't know why POTs happened and I don't exactly know why it went away. I try to not let this loom over my recovery but it's hard.

[Mytwogirlsrox]

I'm sorry relax86, that's a hard way to live life huh? Just be grateful you feel well enough & try your hardest to enjoy your life