Why Exercise Preaching Doctors Are Bad For Us

[HopeSprings]

Not to belabor the point, but I have to get it off my chest. This is the damage done by Doctors going off on their exercise kick. (see below link) Ok, so it's only the "fayobserver.com," not the NY Times ...I only hope it stays that way. I wrote a response to this article, but it didn't go through (!!!) and I was too pooped to re-type it. Maybe the Doctor didn't intend for his article to be intepreted as - lazy, out of shape people get POTS, CFS, Fibromyalgia, but this is how its interpreted and it's just not good for our cause. That's all.

http://blogs.fayobserver.com/appleaday/August-2012/Lack-of-exercise-should-be-considered-a-medical-co

[firewatcher]

Unfortunately, just one of several "fitness" experts blogging on this commentary. What is truly sad is that this is not what Dr. Joyner actually has said! He wants us to have fully monitored, supportive rehabilitation, not a "health club membership." He also mentions that our deconditioning is "secondary" to our illness, as opposed to obesity and type II diabetes which are "primary deconditioning" causing the illness.

I've responded to one of the "fitness experts" on facebook, but she has ignored my posts.

Good luck if you choose to spend your energy responding to this...

[AllAboutPeace]

I hear ya, Naomi!! I keep thinking about what a struggle it is to go through the whole "disability" application process - even with accurate information about POTS, it's a nightmare. The last thing we need is this kind of completely inaccurate representation in the media. One of these days, I'm going to start writing letters too...thanks for doing this already both of you.

Very frustrating

[jangle]

I wrote the author of the study and he basically told me that he was describing the deconditioning as a secondary cause to POTS, with the primary cause being one of potentially many different things.

So actually his view is the same as mine.

[Dizzysillyak]

Is it true that deconditioned people get pots ? By that I mean does their hr jump 30 pts after simply

standing still for 10 minutes ? Have they done actual ttts on deconditioned people ? And how do they define a deconditioned person ?

Fwiw, I try not to let this kind of info bother me. Give 'em a day and they'll say something else stupid.

Lol. Tc .. D

[firewatcher]

The 30 bpm jump in HR is described in BOTH deconditioning and OVERconditioning! You are supposed to use the morning HR surge to gauge if you have recovered from a heavy workout enough to go again.

[Dizzysillyak]

My hr jumps 30 pts and stays there until I lay down. I can feel the strain on my upper body from

hypoperfusion. Esp my heart, lungs and brain.

If I didn't have a petite mal I think I'd still be

functional tho. The longer I push the harder it is to think at all and it becomes dangerous. I run

into things, speech is impaired, definitely can't handle a knife ...

Maybe a 30 pt jump isn't the best way to diagnose pots ? Hypoperfusion maybe ?

[HopeSprings]

I'm sorry, I really don't get the argument. The Doctors promoting this theory say people with POTS frequently report a flu like illness folllowed by a period of inactivity, followed by more inactivity due to the uncomfortable POTS symptoms (I'm paraphrasing). Dr. Levine has said something like 'we all have something in common, something put us to bed.' They're not blaming this mystery "flu" for our illness - they're blaming this period of inactivity (deconditioning) for our illness. So while they're using the term "secondary" - that's not really what they're saying. It doesn't make sense .... so something else was causing the POTS and then whatever that was got better, but because we weren't moving now lack of exercise has taken over as the cause? Causing the exact same symptoms? And most here have said there was no initial period of inactivity, no flu etc. Just fine one day, sick with POTS the next. And others who feel they've been sick all their lives. I'd be ok with them saying exercise has been found helpful in POTS for other reasons - for example because strengthening our leg muscles helps with pooling - now that makes sense. If I've misinterpreted, please someone tell me how? Anyway, my point was the way media interprets what these Doctors are saying- we don't want it out there that POTS is caused by laziness.

[Dizzysillyak]

Hi naomi,

I agree that the author of thus article was promoting exercise as a cure for pots. And the author

is saying that laziness can lead to pots.

I was looking for studies that prove laziness leads to a person getting a condition where their

hr jumps 30 pts after standing still for 10 minutes. To me this test indicates hypoperfusion. But I

could be wrong.

Pots is used in two ways. To describe a hr jump after 10 minutes of standing and to describe

a wide variety of symptoms people with dysautonomia have. I've found that most of my symptoms

that would've been under the pots group diagnosis were from food intolerances / allergies.

Tc .. D

[firewatcher]

One positive! The fitness expert I challenged on facebook (with quotes from the fulltext of the commentary) retracted and corrected her statements! I think she may have actually learned something about POTS in the exchange. Get noisy people! But be polite!

[HopeSprings]

That's great, Firewatcher!

[bellgirl]

I was the most active person alive for many years, even when I was sick, fighting through, until I had dizziness/vertigo that stopped me in my tracks. Nurses don't choose to be sick or lazy...Geez, if I hear this one more time, I'm going to spit further than a Llama!! This is so ridiculous...and I'm one of the skinny ones, too, btw . Thanks for standing up for us Firewatcher!! Thanks Naomi for posting and putting more fire under me for awareness!! This is just plum crazy talk...because I've always been one of the most conditioned people I know, doing every exercise known to man!!

[yogini]

In reading the piece on fayette, I am not sure the author is attacking POTS. She is just saying that being a couch potato shouldn't be a medical condition. Seems she is misreading/misquoting the medical article.The quote says that conditions like CFS have low exercise capacity just like POTS. If anything, I would be more upset reading this if I had CFS, as it implies POTS is the only one of these conditions really medical. She is also equating bring a couch potato with lOw exercise capacity, which shows her ignorance. Couch potato means you don't want to exercise; low capacity means you can't exercise. As Firewatcher says, I don't think the Dr who is being quoted is saying anything bad about POTS. It also looks like an opinion blog, which is just a random spewing of someone's thinking. It shouldnt carry any medical weight.