"deconditioning" -- Here We Go Again

[Carrie]

Hi all,

I was reading the new DINET newsletter and the last abstract was from a Mayo Clinic paper finding that 90% of POTS and OI patients are deconditioned. http://www.ncbi.nlm.nih.gov/pubmed/22993288

What I want to know is, who are these patients? Do you think this is really representative of dysautonomia as a whole? I know so many people, myself included, who were/are extremely athletic: runners, dancers, gymnasts, etc. In fact, in some cases, it seems like excessive exercise led to overtraining, which led to worse symptoms!

A recent EKG of mine showed, in fact, an enlarged left ventricle, which is indicative of endurance training.

I'm all for exercising, and probably the "average" person would be healthier with a bit more exercise-- but this "accusation" is damaging and stigmatizing for those POTS patients who are conditioned. So I'm wondering what is going on with the Mayo Clinic article. Is deconditioning really the problem in 90% of cases, or is their sample somehow biased?

[Guest Hanice]

I biked everyday and ran and jogged everyday of my life. Maybe pots leads to deconditioning but it certainly does not start because of it! I mean, come on! Most of us are skinny girls.... what are they talking about? This is offensive.

[looneymom]

It's hard enough to get a diagnosis. I disagree that a bike test is needed, a tilt table test is sufficient. Someone who has been sick and weak for two years is obviously going to be deconditioned. I personally think the deconditioning explanation is used when doctors can't figure out what is causing your POTS. It would be nice if doctors/researchers would look at other strange symptoms and see if this might be the cause of your POTS.

[badhbt]

I agree. I think too much excersise was my trigger.

[Guest Alex]

Carrie, and everyone else I understand your frustration.

Here is another more recent article published by Mayo. Wish I could read the whole thing tough as the abstract mentions no significant differences between the severely deconditioned and the non-deconditioned ones...so I guess not everyone with POTS/OI is deconditioned?!?

Regardless, lately Mayo seems to consistently hint at deconditioning in their POTS/OI articles.

http://www.ncbi.nlm.nih.gov/pubmed/23729158

Orthostatic intolerance without postural tachycardia: how much dysautonomia? Abstract

BACKGROUND:

Chronic symptoms of orthostatic intolerance occur in postural tachycardia syndrome (POTS) and patients with orthostatic intolerance (OI) without tachycardia. We recently reported that deconditioning is almost universal in both patient groups. In this study, we focussed on the question of how much dysautonomia, besides orthostatic tachycardia, is there in POTS vs. OI, and how the two groups compare in regards to clinical, autonomic, laboratory, and exercise variables.

METHODS:

We retrospectively studied all patients referred for orthostatic intolerance at Mayo Clinic between January 2006 and June 2011, who underwent standardized autonomic and exercise testing.

RESULTS:

Eighty-four POTS and 100 OI fulfilled inclusion criteria, 89 % were females. The mean age was 25 and 32 years, respectively. Clinical presentation, autonomic parameters, laboratory findings, and degree of deconditioning were overall similar between the two groups, except for the excessive orthostatic heart rate (HR) rise and mild vasomotor findings observed in POTS but not in OI (slightly larger Valsalva ratio and incomplete blood pressure recovery during Valsalva). Both groups responded poorly to various medications. Severely deconditioned patients were similar to non-deconditioned patients, except for 24 h urine volume (1,555 vs. 2,417 ml), sweat loss on thermoregulatory sweat test (1.5 vs. 0.5 %), and few respiratory parameters during exercise, which are likely clinically insignificant.

CONCLUSION:

Though similar in clinical presentation, POTS and OI are different entities with greater, albeit still mild, dysautonomia in POTS. The clinical and pathophysiological relevance of minimal dysautonomia in the absence of orthostatic tachycardia as seen in OI remain uncertain.

Alex

[SeattleRain]

"Symptom duration was 4 years"

I think what they're getting at is people with autonomic dysfunction become deconditioned after the fact -- not before. For the past year my physical activity has been quite minimal and I would consider myself to have become deconditioned. This was because of the symptoms -- not the cause of them. I sort of dug myself into a hole and it's been difficult to get out of. I think staying active is imperative to retaining or gaining endurance and stamina and helping alleviate symptoms. There has been a plateau for me but without exercise I tend to get worse. That's my 2 cents.

[clairc]

I think their reasoning is plausible but it's a big step to assume that retraining will decrease deconditioning and improve symptoms for everyone.

We know that POTS is a syndrome, it's not a disease it's a collection of symptoms which can have many different causes. Deconditioning is known to cause POTS and retraining can improve those patients, but as many people have said, they were in good physical condition before they started with POTS symptoms and they became deconditioned because of having POTS. To me that suggests the deconditioning is caused by the syndrome, not the other way around, and retraining may not be possible due to whatever is casuing the POTS. In my case that is Joint Hypermobility Syndrome.

I've been stuck in this catch 22 situation for over 20 years. The doctors tell me that I will feel better if I exercise, but even the most gentle exercise makes me considerably worse. I am not in poor condition because of laziness, depression or fear of moving. I have soft tissue rheumatism in just about every joint in my body and a circulatory system that is inefficient. Retraining me causes pain and stresses my body which flares up the POTS symptoms even more. It's a vicious cycle and I'm not sure how to break out of it.

[davecom]

It's an awful catch 22 to be in. I think the most practical thing we can all take away from this controversy is that if you can exercise, you should force yourself to do so. If you can't, you should rest assured that even highly conditioned athletes have come down with POTS - it's not your fault and since there is a non-deconditioning mechanism behind it, there is hope that you can find and treat your underlying cause - or that medical science will soon be able to.

[kayjay]

"Normal" People that are severely deconditioned or have been on extended bed rest have Orthostatic Intolerance.

I didn't find this article offensive. What makes most of us different is that we have something else causing our Orthostatic intolerance. Dehydration will also cause pots.

IMO it's important not to ignore the facts. Deconditiong causes Orthostatic intolerance. I'm happy for people that are deconditioned who can get better with exercise.

I tend to think of what I have as dysautonomia anyway. The Orthostatic intolerance and tachycardia are just symptoms really.

Mayo clinic diagnosed me in 2009. I've made 3 trips total. They suggested exercises that would be safe for me. They never suggested that deconditioning caused my pots.

[westernmass]

I just was reading the newsletter, and loved it except had the same reaction to that study review!

As others have said, I was in the best shape of my life when I got suddenly sick, have passed the stress tests, and am back up to exercising regularly. It took me almost a year to build back up to what I was pre-POTS. Even though I can and do exercise now, I definitely am not cured and have symptoms every day. I am stronger physically, which is nice, but still have POTS and all that comes with it.

Ryan mentioned that perhaps the test was suggesting that POTS patients became deconditioned after the fact- I didn't get that from reading the article BUT that's the only thing I can think of that makes sense. I could imagine that during the diagnosis process many people would stop exercising (I did until we determined that my heart was structurally sound) at least for a while, and that people who become severely disabled or bed bound obviously become deconditioned. But I can't imagine 90% of POTS is caused by deconditioning! Also, what does "symptom duration = 4 years" mean? Did these people get better after 4 years, or is that just how long the study was?

I was very puzzled by that study.

[Carrie]

westernmass, I think "symptom duration" meant the patients reported being sick for 4 years prior to the study.

[HopeSprings]

How timely - just watched this new video by Dysautonomia International:

http://www.youtube.com/watch?v=Z-MQONfOE8Q