How Much Do You Think Deconditioning Led To Your Symptoms?

[Alaska]

How Much Do You Think Deconditioning Led To Your Symptoms? There are three big factors in regards to my physical activity that happened before I developed NMH. 1) having a job that was sitting all day 2) having children, so much less active 3)knee surgery that took like 10 months to get to running again.

[POTLUCK]

I do not think deconditioning led to my symptoms as I was a frequent hiker and runner when symptoms came. However, it may help my symptoms to get in shape now, a lot of the literature seems to indicate this, and doctors seem to suggest this, and it can not hurt me so I intend to try to get in better shape. I do not have syncope so have started walking daily and intend to increase to running/walking, then running, then increasing distance. So I voted for "not at all."

[MandyBrook]

I had three children within three years 2008, 2009, 2010. My symptoms started after giving birth in 2010. So, it's likely deconditioning led to POTS.

[futurehope]

Deconditioning can lead to symptoms. Deconditioning cannot cause a permanent POTS condition, IMO.

[brethor9]

I was insanely active before getting this illness!! If anything I think the fact that I was doing TOO much led to this illness.....think I stressed the system too much and it just couldnt cope with it anymore

Bren

[Katybug]

I was super active and a workaholic until I had severe symptoms. Even after the onset of symptoms I still faught to keep up with my normal activities for several years before it became dangerous for me to keep doing it.

[LindaJoy]

I was doing tae bo five days a week, lifting weights three days a week or so, biking miles at least three to five days a week, starting yoga ball, working a 60 hour a week job that I loved, and walking five miles each night with my husband. I was absolutely not de-conditioned when I became ill with Dysautonomia. Mine came after having a severe flu, then going on an antibiotic that sent me into severe, severe tachy and landed me in the hospital (Avelox). I ain't been right since.

Linda

[heathmcev]

Ditto katybug!! I was going 24/7 in a very demanding job. Was also in the best physical shape of my life - working out with a trainer. I pushed and pushed through symptoms for years before I couldn't push anymore.

-Dizzyde

(null)

[puppylove]

If deconditioning caused POTS wouldnt half of America have it?

[POTLUCK]

Bren- I have wondered that myself

Linda- I used to do Tae Bo at Billy Blanks main studio in LA ( valley side of the hill ) You only had to pay when you went. It was loud, fun, the stars used to go, mostly women, ( a good thing for me as a guy, ) and the schedule was all day long so you just called to hear who was doing which hour of class. I liked his adopted daughter's ( I only note adopted because of the race difference, many did not realize she was his daughter.) class the best- incredibly high energy. He liked to do these weird dance moves to much. His brother used the weights alot to tire the class. His sister was real good with her martial arts form and her class was my next favorite. But his daughter led us right out the door and down the street in bare feet one time she was so high energy.

Tae Bo might not be the best at this stage for me.

[humbled_pie]

Pretty sure, in my case anyway, that POTS (and the EDS to which it is secondary) led to the deconditioning. Not the other way around.

[Chaos]

I'm in the column of people who were in very good shape and extremely active/over-committed when they got sick. The day I "got" POTS, I taught a yoga class in the morning and attended a 2 hour advanced class that evening. By the time I drove home after that class, I had a high fever and could barely walk into the house. The next two days, even with a fever etc, I refused to stay in bed and was up as much as possible moving around, showering etc. There is NO way I was deconditioned when I became sick. And I was very aware of how fast people can become deconditioned so I made sure I took measures so that it didn't happen to me.

Since the end of January, I have been exercising every day and had worked up to 45 minutes of vigorous walking/bike riding. Then suddenly on Easter, I could barely make it around the block. Literally changed that dramatically from one day to the next. Still haven't been able to get back to anything close to what I was doing a couple weeks ago.

[ramakentesh]

I personally think that the only people who think that their POTs was caused by deconditionng are the ones who believed what their doctor told them. There isnt even any evidence that deconditioning can cause POTS. The example they frequently use is astronauts and there is now overhwhelming evidence that their dizziness occurs because of upregulation of systemic nitric oxide activity leading to reduced sympathetic activity.

the fact that exercise might help POTS doesnt prove that therefore POTS is a result of deconditioning.

My POTs came on out of the blue while I was training for a running event - pushing myself to skip 1000 skips in ten minutes to increase cardiac output. Not only that, I was running constantly once I improved after two of my relapses and the only relapse that was lesser than the previous was the one where I didnt run. So for me exercise helps POTS but only marginally - it still flares up whether im active or not and even running 5 kms three times a week, doing 30 pushups and chin ups, 100 sit ups three times a week and swimming half a km for my back did nothing to stop a POTS relapse twice.

[rach73]

Hi,

I dont believe de conditioning caused my POTS either. Up until the day I got POTS I worked full time standing most of the day running a busy dept with 130 staff. I ran a house, went out socially and walked my dogs at least 20 miles a week. I was reasonably fit and the correct weight for my height - now horribly overweight! due to steroids in 2008 when I put on 5 stone in 9 months - have lost 3 stone but still need to lose the rest.

Ive always been reasonably active and before owning dogs used to walk around 10 miles every week.

Ive always had symptoms of POTS - I just didnt know what they were and they became really bad after I suffered a migraine of gigantic proportions. I just simply never recovered.

I understand that prolonged bed rest can cause POTS symptoms but these patients tend to get better as they become more active, its more like a temporary POTS - not like the syndrome the rest of us have to live with.

Rach

[Hope]

I think my poor immune system coupled with too much stress on my body due to changing 40-something hormones, a miscarriage last summer, and an overall stressful life has plunged me into this prolonged episode of POTS. I say that because I am certain, now that I know what is going on, that I have had this since I was a teenager and have had symptoms waxing and waning throughout my life. Not sure if I have a poor immune system from all the illnesses I've had or if I have had all the illnesses because I have a poor immune system. When I was a teenager I would have like to have played tennis or run track, but I never felt well enough for that often feeling like I was going to pass out and fatigued. Before this years episode that has disabled me (hopefully temporarily), I was walking daily, biking often and with 4 kids, running from one thing to the next. My feet would hit the floor at 5:30 am and I would go until bedtime. Of course that has all changed. Now I am grateful that I have progressed from the "bed" to being able to take a shower standing up and not have to go to bed after!!!

[songcanary]

I was very physically active and running my own successful business when my symptoms started gradually. I pushed for a couple of years before realizing that something serious was going wrong. I got so physically weak at that point that I had to stop everything.

Now with the luxury of hindsight, it is obvious to me that unrelenting stress was building up and I did not have good coping skills at the time. And without the boring details, I mean years and years of major stressful events with no let up. Even my rheumatologist, after taking my history, said 'well, then it just becomes DUH!'. He was so right.

[LindaJoy]

Hey, Potluck,

That's too cool about Billy Blanks. I used to do his hour and a half video every other day, and I felt sooo good about myself that I could do it as it was pretty demanding. Of course, while I was doing it, I continually thought that I would die, or ask myself why I was being so stupid, etc., but it made me feel like I was pretty strong and healthy when I was done. His adopted daughter: was she caucasion, with short dark hair and appeared on many of his videos? If so, I really liked her and could follow her directions pretty well.

Don't you all just get so tired of hearing doctors say that POTS is caused by deconditioning, and if we'd all just get out and move, we'd be so much better? I've been told that by so many doctors, it's not funny. I always, always, always have to tell them, "Look, when I got sick, I was healthy. I ate healthily, I worked out (and I go down my list of exercise routines I did faithfully each day), I worked a 60 hour a week job, I was happy---normal. I did not sit on my bum for long each day. And, I still got down with this disorder, so please, doctor, tell me something that makes sense in my world, with my experience.

Actually, I was diagnosed with POTS years earlier, in 1995, when I saw an endo at Cleveland Clinic for a pituitary tumor, who did orthostatics on me and said, "Oh, you have POTS." I asked him what that was, and he basically said it was nothing and moved on. I didn't think anything of it since he didn't make a big deal about it. During that time, I was exercising a lot, biking about 20 miles a day. I was actually a bit obsessed, I think, but at no time, when my POTS was a big concern, was I idle.

[Birdlady]

There is no way I was deconditioned before diagnosis. Perhaps I am now, but at 16 I loved doing my 8 minute tae bo workout, riding my bike and being a normal teenager. Kind of funny a handful of us were doing Tae Bo. The next research paper that comes out might say Tae Bo caused POTS...

If deconditioning caused POTS wouldnt half of America have it?

Too much common sense! hahaha

[LindaJoy]

Honestly, I have to think that Pots, and other auto-immune disorders, are caused by a virus, a cell problem, something doctors just haven't figured out yet, because the more people I talk with who have chronic illnesses of unknown origins, were very active people before they got sick. Then, they got a flu, or had a surgery, or took a medication that didn't agree with them. All of a sudden, they have POTS, or fibro, or lupus, or CFS, or some other illness that's chronic and / or considered auto-immune.

All I know is, I was a healthy, active, "normal" woman before I had my gallbladder out in August of 2004, then got the flu in January of 2005, took an antibiotic I had a very bad reaction to, then just couldn't get better. I was sluggish, had pain, had tachycardia, GI problems, etc. I ended up being tested for POTS in February of 2005 and was found to have severe POTS. I just ain't been right since.

Linda

[firewatcher]

I believe that there is a subset of patients that has POTS-like symptoms because of deconditioning, BUT, few of us on this forum would meet that criteria. I do think that exercise is a valid coping mechanism for the underlying problem...if you can do it.

However, one of the ways many athletes can tell if they have overtrained is by taking orthostatic measurements and seeing a greater BPM rise in HR:

"Well rested athletes will show a consistent heart rate between measurements, but Rusko found a marked increase (10 beats/minutes or more) in the 120 second-post-standing measurement of athletes on the verge of overtraining. Such a change may indicate that you have not recovered from a previous workout, are fatigued, or otherwise stressed and it may be helpful to reduce training or rest another day before performing another workout."--Overtraining Syndrome and Athletes By Elizabeth Quinn, About.com Guide

[AllAboutPeace]

Wow, that's really interesting, Firewatcher... Thanks for posting that!

Something to think about, when many of us talk about the "go, go, go" lifestyles we had before getting sick. I know that I, personally, had not given my body time to rest/recoup, instead I added more exercise.

[Monstrosity]

Deconditioning can lead to symptoms. Deconditioning cannot cause a permanent POTS condition, IMO.

I agree. Its made some symptoms worse but I was in good shape when this first kicked in high gear.

[POTLUCK]

I think if deconditioning caused POTS in an otherwise healthy person there would obviously be a much much larger poulation of people with POTS and it would be an illness more common in populations which could not get, or did not get as much exercise. POTS is more common ( not read only ) in younger people.

I have started exercising again. I guess the question in my mind is not if it caused it, but if it can cure or even help it.

[bellgirl]

I agree with Katybug, and Bren; mine started like LindaJoy, with a virus. I've done every exercise known to man, and have always been in good condition, even after having children, so that just can't be true that deconditioning causes it...I think if anything, it could be caused by over doing like what Firewatcher mentioned in that article of the overtrained athletes!

[julieph85]

My pots started at the end of 14 weeks of strict bed rest during a complicated pregnancy. I'm 100% positive my pots was brought on by the bed rest . I think it triggered an autoimmune reaction in me when I tried to start standing up after 14 weeks of laying on my left side. My docs all tell me they don't think it was the bed rest because my pots acts like an AI disorder and flares and remitts. However I disagree with them because I never had a single dysautonomia symptom until I tried standing after 14 weeks of laying. I cannot deny that connection