Article: Lack Of Exercise As A Medical Condition

[firewatcher]

Get ready, here it comes again:

http://www.sciencedaily.com/releases/2012/08/120813155143.htm

Dr. Joyner (Mayo) is saying that POTS should have exercise as the first-line treatment...

[Dizzysillyak]

Can they tell which of us would benefit and which ones wouldn't before recommending 3 months of exercise ?

Maybe the Pacific labs test for PEM would work. But, from what I remember not everyone is allowed to do the

Pacific labs test tho. Fwiw, I had this done performed back in 1992 so other labs can do this.

And are they willing to order a maid, gopher and chef so we can focus on exercising instead of staying

alive ? If so, I'd try it. Actually I tried it without the help and stayed in a state of chronic pem. Of course it made my muscles stronger but my oh and pots stayed the same. I'm not sure if there

were specific exercises I should've tried tho.

Tc .. D

[brethor9]

that would be fine if we all had simple POTS and no other dysautonomia symptoms (mast cell, neuropathy, EDS etc)..... and what about people like me whi have exercise induced allergies??? I am getting really tired of the fact that these so called doctors; lump all of us together; do not take into account that most of us were in very good shape and exercising when they were hit with POTS ......so can one of them please explain in a medical article how that happens??? ;( cause that is one explanation i have not heard yet! this crap just really gets my fur up ;(....sorry for the rant...bad night........

[songcanary]

Gets my fur up too, Bren. I was so physically weak that I could barely stay upright. I had been working out but it made me much worse. I am sure I had an adrenal component but do doctors look at that? Grrr.

[hholmes13]

Ugh. I agree with you all that people shouldn't all be lumped together like that because often exercise doesn't help at all. To top it off, I was exercising 6 days/week training for a half marathon when my POTS came on. It was not from a lack of exercise.

The line about exercise before medication bothers me...for me personally, I wouldn't be able to tolerate any exercise without my meds to help control all the horrible near syncope/dizziness! Articles like this frustrate me because they make it sound like people with POTS are lazy and that is why we're ill.

Exercise could probably be beneficial for many people...but I wouldn't think of it as a cure-all. Like brethor9 said...people with other underlying conditions have a lot going on that make exercise difficult. I have HEDS, and I have to watch how much high-impact stuff I do because my joints can get really bad and my stupid hips like to sublux. I've been jogging/running again, but making a point to listen to my body and not do it every day.

[Relax86]

I was in decent physical condition when I got POTS. I also had classic - I mean right out of the textbook - adrenal fatigue symptoms. I could barely get out of bed to pee. If I could be sitting up at the kitchen table for about 30 minutes by 230pm when the kids came home from school I considered the day a success. By 5ish I did feel a little normal as was able to function for a bit. I would cry when it was time to go to bed b/c I knew I was waking up to start the nightmare again. I know in my heart of hearts I was unable to begin to function without hydrocortisone. It really helped my symptoms and my situation to be able to put life back together. Later I added a short period of midrodine which also did it's job. I can work, and exercise now. I still do not feel like me. I am making an attempt after my next menstrual cycle to wean down another dose of HC (currently taking 5mg 2x/day). When I tried to exercise too early (such as March/April) I paid dearly for those low level attempts. I do feel that slow steady attempt did contribute to my improvement but the intensity was very very low. I think my message is that each one of us has to find our center and solution to the best our bodies will allow us. I am so grateful and feel so lucky to be recovering. On the days that I get p*ssed that I'm still not me I try and remember all the folks who are truly bedridden and still searching for their answer.

[Dizzysillyak]

Hi relax,

I have a freind who's taking hydrocortisone too who says it perks her up. She's still mostly bedridden tho.

She has cfs tho not just pots. Not that just pots is minor but you know what I mean.

I mention this because I wonder who would benefit from hydrocortisone. I thought I read that it could be a

problem after awhile because the adrenals wouod stop making it. But if our adrenals aren't making it

anyway maybe we should take it. Or is dhea and pregnenolone a better option ?

Tc .. D

[flyingsquirrel]

I "pushed through" my tachycardia and kept running a couple of years ago and it put me into the early stages of heart failure...at age 27. Once we realized that this was what was going on (tachycardia induced cardiomyopathy) I recieved strict orders from my old cardiologist to stop running until we could get my heart rate under control. Thankfully this is a reversable condition, but now I'm getting crap from my new cardiologists for being "deconditioned". I feel like I have to prove to them that I'm not deconditioned and prove to them that I actually do go into heart failure because they don't believe me (or my medical records). Good thing I like running.

[AllAboutPeace]

I followed the link to the main article from Journal of Physiology http://jp.physoc.org/content/590/15/3413 .

This is how it describes onset of POTS.

"POTS is a syndrome that is diagnosed far more frequently in young and middle-aged women than men, and by the time of definitive diagnosis patients have typically spent several years seeking expert medical opinion for their symptoms. Frequently, these individuals report a distant flu-like syndrome followed by a period of inactivity, followed by more inactivity in response to the unpleasant sensations they have while standing or doing mild physical activity. Thus, a downward spiral of inactivity and deconditioning occurs. This downward spiral can be made worse by related perceptual issues including somatic hypervigilance and fatigue that can be improved with exercise training (Benrud-Larson et al. 2003; O'Connor & Puetz, 2005). However, when these individuals seek medical advice their responses are seen as abnormal and frequently pharmacological treatments are prescribed (Joyner & Masuki, 2008)."

This kind of onset could certainly explain the "deconditioning" aspect they are looking at - but how many of us is this true for??? I know it definitely wasn't the case for me - and I know I'm not alone - (as hholmes and Relax have already shared). I went from exercising/ being active/ working full-time/ from all appearances healthy to completely disabled in a day !! Relax86, your early symptoms sound just like mine. I would use every ounce of energy to get myself dressed for when my son got home from school - I'll be doing well today if I can shower by suppertime (bad day)...

I do force myself to exercise even when I have to drag myself out of bed to do it...but even on a good day the max I can do is 6 mins at a time on the recumbant bike (and that's after 9 months). I really can't push my heart.

Maybe it's better that my primary POTS doc isn't up on reading the latest theories Argh...

[brethor9]

yes same for me! I pushed and pushed through my symptoms for 4 years until I actually landed in hospital and even after I got out I continued to push until my body said very clearly NO MORE!!!....if you won't stop, I will stop you ..... I strongly believe that your body will go into self preservation mode when it has had enough.....I actually have a friend who ended up in a coma due to the exhaustion she caused to her body....scary! ......I was a very go, go, go person before POTS certainly no deconditioning here and even now I am constantly fighting my symptoms to stay upright as long as possible....this article almost implies that we are causing this ie "perceptual issues" what is so perceptual about your legs turning purple?? how is that a perception? either they are purple or not....that's pretty black and white....arrgh!!!

[Batik]

This sounds suspiciously like the way ME/CFS patients are treated. You actually end up with a lot of very bad science, clinical trials not worthy of the name which report results to be the opposite of what they actually were (e.g. putting the "slightly worse" participants in the "improved" group), and governments following the recommendations because it saves them a lot of money if they don't have to give actual treatment to these awkward patients. Considering the massive symptom overlap, and the possibility that there are a number of patients with both conditions, I'm wondering if the problems with treating ME patients has bled over into POTS patients.

[anna]

"Lack of exercise as a medical condition"

Not too long ago the world health organisation decided to employ the 'Biopsyscosocial' model of medicine, thus we get this sort of scientific logic!

Citation

Database: PsycARTICLES

[ Journal Article ]

Correlates of Functional Disability in Patients With Postural Tachycardia Syndrome: Preliminary Cross-Sectional Findings.

Benrud-Larson, Lisa M.; Sandroni, Paola; Haythornthwaite, Jennifer A.; Rummans, Teresa A.; Low, Phillip A.

Health Psychology, Vol 22(6), Nov 2003, 643-648. doi: 10.1037/0278-6133.22.6.643

Abstract

The study investigated correlates of functional disability in 94 patients (89.4% women, 10.6% men; mean age=34.2 years) with postural tachycardia syndrome (POTS), a clinical syndrome of orthostatic intolerance characterized by significant functional limitations. Path analysis supported a model in which, controlling for demographic and disease variables, catastrophic cognitions were directly related to the latent variable functional disability, whereas somatic vigilance, anxiety sensitivity, and neuroticism were indirectly associated with functional disability through their relationship with catastrophic cognitions. Results suggest that modifiable psychological factors play a role in the functional limitations experienced by patients with POTS. Longitudinal research is necessary to confirm these relationships. (PsycINFO Database Record © 2012 APA, all rights reserved)

Now sorry but I really really do not agree with this view.

[peregrine]

Gah - glad to know I'm not the only "not deconditioned, no really" person with POTS out there. My Valsalva had a narrowed pulse pressure, which the ANS neurologist said could be due to one of SNS failure (ruled out by the rest of the Valsalva, though the TTT indicated some dysregulation), dehydration (was drinking 2-3L of water/day and 6g of salt then), or deconditioning (I had been walking 3-6 miles/day at speed at that point). Ruling out the SNS and dehydration, she assumed it was deconditioning despite the exercise. I did have a brief period of deconditioning right when POTS started (1 week road trip), but at the point of the TTT I was doing okay. Grump - I'm tired of being told that that's the explanation!

[HopeSprings]

Where are they getting this from?? He must not have seen the thread on here where the majority of people stated they were extremely physically active before developing POTS - most more active/athletic than your average person. Also, many people end up in bed for a period - illness, pregnancy, surgery etc. - not everyone develops POTS. So even if it's true that deconditioing can cause this, they'd need to figure out what's different about the small minority of people who do get it. I think they're just being lazy. They don't know, so they blame the patient.

[Batik]

Path analysis supported a model in which, controlling for demographic and disease variables, catastrophic cognitions were directly related to the latent variable functional disability, whereas somatic vigilance, anxiety sensitivity, and neuroticism were indirectly associated with functional disability through their relationship with catastrophic cognitions.

Yep, sounding very like what the ME patients get lumbered with. There was an article about "catastrophising" discussed on Phoenix Rising, where the article basically said that patients who think they will be bad at climbing stairs turn out to be bad at climbing stairs. Instead of concluding that these patients know their own bodies and limits, they concluded that the patients were somehow making themselves unable to exercise because they'd expected it. "Catastrophising" means "expecting to get worse without any foundation", as far as I can tell, but the problem is that it is applied precisely to the patients who have an excellent foundation for expecting to get worse.

[brethor9]

sad thing is if we all were diagnosed with something not rare like "diabetes" this wouldn't even be an issue..... I am sure no one accuses them of anxiety and neurosis.... hard to believe this is what we are getting from top specialists at some of the best hospitals....talk about ignorance

[firewatcher]

Grrrrrr,

The press is beginning to call this "chronic laziness" and "lazyitis!"

The quotes they are getting from Dr. Joyner are not in the fulltext of the article, where he states: "The Shibata study offers hope for these patients and shows that carefully monitored and progressive exercise training in a supportive environment is a treatment option that should be tried first. If deconditioning were a more mainstream medical diagnosis, perhaps the awareness of the average physician treating the average patient would increase and more formal therapeutic rehab programmes that include cognitive and behavioural therapy would emerge. In cases like POTS ‘secondary' deconditioning could be diagnosed and treated. For many other types of patients, like those with obesity and type II diabetes, the diagnosis might be ‘primary' deconditioning."

NOT the now, oft quoted:"There's no need to join a gym or get a personal trainer: build as much activity as possible into daily life. Even walking just 10 minutes three times a day can go a long way toward working up to the 150 minutes a week of moderate physical activity the typical adult needs, Dr. Joyner says."

Brethor9--Diabetes used to be considered a mental disorder too.

[songcanary]

Relax88,

I mirror your exact symptoms and comments. And everyone else's to boot!

[anna]

Yes Batik you are absolutely right looks like POTS is going the same way as CFS/ME.

[Katybug]

RRRRRRRRRRRrrrrrr! I would rant about this but you all have done a good job of it for me. I pushed for years through the symptoms because I was and enjoyed being active and physically fit. I would give anything to go on one of our 3 hr hikes with my doggy again. I didn't get POTS from being sedentary (sp?) but I am deconditioned now from POTS. Maybe if the medical community would become better at diagnosing POTS in its early stages, then they would see us when we are still active and early enough in the disease process that we could prevent becoming deconditioned from it. But, if they are studying people who have had POTS for a while, how can they possibly base any study on them and call it scientifically significant regarding deconditioning causing POTS...if they weren't studying them at the beginning of their disease, its a really questionable conclusion.

Ok, so I ranted anyway!

[McBlonde]

Bren..."hard to believe this is what we are getting from top specialists at some of the best hospitals....talk about ignorance"

EXACTLY! I so agree with what everyone has said.

I think it goes back, also, to using the word POTS to describe all the variations of autonomic disorders. How you treat simple POTS and the expected outcome is one thing.. They should have stuck with that & named the other autonomic variations other names. All that article does is make us look like lazy people that would get well if only we would get off the couch and exercise and coming from Mayo no less!!

[Relax86]

Hi relax,

I have a freind who's taking hydrocortisone too who says it perks her up. She's still mostly bedridden tho.

She has cfs tho not just pots. Not that just pots is minor but you know what I mean.

I mention this because I wonder who would benefit from hydrocortisone. I thought I read that it could be a

problem after awhile because the adrenals wouod stop making it. But if our adrenals aren't making it

anyway maybe we should take it. Or is dhea and pregnenolone a better option ?

Tc .. D

I'm 100% sure that I couldn't have gotten better without it. I also am under the impression that I used a management dose - for me meaning I only gave my body what it was unable to make/produce. I always took a little less than my gut was telling me I needed. I rested when I had to rest and tried to move when I could. I could have never added any cardio - what so ever as my BP's were too low therefore my HR was to high. But I started with seated weight training to pull me out. Low weights and low reps. Built the reps from there and made routine attempted progressions. I saved my walking and cardio for attempts at community tolerance - grocery store etc. Sometimes I would only make it to my husband's truck and for the ride nothing more. At any rate - I know if I pushed cardio at the time I was feeling most ill I just would have dropped over.

[kluesyk]

I agree with your responses above. I was VERY active and had horses that I took care of when my POTS started. I had pregnancies, ect that I was not active and DID NOT develop POTS, then.

Now if I walk 3 minutes on a treadmill(stress echo test),my heartrate is 180 and my BP is 175/110. My cardiologist said I can't keep doing that...heading to stroke city.

So maybe in a small subset of patients, exercise does help. Not me. It is everything my body can do to just get me upright and walking for a short time.

Wish they would take into account people like us who do not fit the box the drs always try to fit us into.

I did have thyroid and adrenal failure and then finally diagnosed with POTS, so perhaps mine is a bit different, so that needs to be included in papers written also.....the fact that there ARE POTS patients that DO NOT benefit from exercise, in fact will make them worse.

[Anoj]

thanks, doc, for making things worse for us. i'm sure disability insurers and social security, as well as less educated doctors will love reading this and make our lives miserable in turn.

this is one of the reasons i think "awareness" can be bad. not all doctors have the same level of understanding of this illness and spread the wrong information. heck, the ones who really know don't really know.

we all know that exercise can HELP, but what is the CAUSE of our problems?

WHAT IS THE CAUSE?

i believe that we are all pooling somewhere, and all these other bodily functions being out of whack are just reactions, whether hyper, traditional or whatever form of POTS.

WHY ARE WE POOLING? WHY AM I POOLING?

i think there is a real, NEUROLOGICAL reason for this! why is it that when i drink caffeine or take any stimulant, it feels like a metal pole is being electrocuted and twisted inside my brain, then i am so sleepy i can't help but take a 3-hour nap. this has nothing to do with "deconditioning."

why is it that three rounds of 3-month exercise sessions didn't cure me over the course of 2 years? (and more exercising at home)

my doctor subscribes to this "deconditioning" philosophy, and it's not helping me.

[anna]

Oh Anoj I am sure it is the insurance companies that finance this kind of 'research/report'.!