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Exercise Even If You Think You Can't!


Leigh

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Well this morning I wouldn't be able to be diagnosed with POTS. My supine HR was 75, my standing HR was 80. I felt only a slight signal of lightheadedness.

Unfortunately now my HR is back up in the high 90s low 100s this afternoon. I definitely seem to be oscillating. Better at nights and mornings, worse in daytime.

Still please be cautious with exercise.

Jangle,

SO HAPPY! Hope it continues on for you. Keep going!

Issie

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I actually just got out of the hospital from excercise lol.... I started having PVCs that escalated to about 5 a min and I completely black out..not sure how long, but I was admitted and they told me in no way shape or form am I to do any type of physical activity until I see Dr. Goodman next month.

i started get very severe PVCs after an excercise session. Then after my last session, something just didnt feel right. I was laying on the floor and couldnt catch my breath for the life of me. Then the PVCs started in and I kept loosing conciousness. It was very scary and i really hope it doesnt turn me off to excercise in the future. I dont think I will be able to until I am on the right med combo first to at least stable me out. I am not trying to say this to scare anyone away, but you really should get checked out before you start any type of physical activiity you normally dont do.

When I was doing workouts I felt pretty good for a couple hours, probably from increase blood flow, then I would crash HARD the next day. I only did a couple mins on my bike and some light arm ones.... guess I wil just wait for Dr. Goodman

:)

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"A condition by definition is temporary. This is not a disease---it's a condition."

It depends on WHY you have this to begin with. Mine is genetic (my mom also have POTS/OI) She has Crohns disease and shortly came down with POTS after. I believe we have autoimmune issues that contributed to our POTS. It depends on what is causing your POTS can be treated or not. Since my mom's body doesnt hold in fluids, she is constantly low on blood volume. She gets hydration everyday, but it never seem to be enough.

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Hi! This is only my second post, but totally the reason I joined this forum, because I cannot stress enough how key exercise has been in helping me feel better this year.

First of all, I loathe exercise. I always feel worse after. I seriously hate everyone at the gym who says working out always makes them feel better.

So after 20 years of telling people I couldn't work out because I have a heart condition (I didn't have a diagnosis but my heart would jump to 200 within a minute of running), I finally got a diagnosis of IST (my cardio said she couldn't call it POTS, because people grow out of POTS) and I found tons of research spouting the benefits of exercise on POTS patients. And luckily, my heart checked out structurally, so my cardio cleared exercise as long as I wear a heart monitor.

Ergo, I hired a personal trainer. For the past three months I have been seeing him three times a week for a mere 30 minutes each. I am the same weight as before, 120, but I have converted 9lbs of fat into 8lbs of muscle... Taking my body fat percentage from 24 to 18.

Two weeks ago I read an article about the benefits of high intensity interval training (HIIT) and looked up HIIT and POTS and found the following article:

http://newsroom.heart.org/pr/aha/1356.aspx

Since then I have added 4min tabata intervals into my training which I think was the catalyst for what happened this week.... Twice I caught my standing heart rate to be 85!!! It didn't last and was pretty random.... But it's a start!

And everyone around me says I seem a lot better. Still a long ways a way, and I was hit hard by barometric pressure changes this week, but there's light at the end of the tunnel now.

Sorry this was so long!

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Thats really interesting and inspiring. There was a program on last night about HIITs and it's impact on health from just 20 seconds x 3 with short rests done 3 times a week. The important thing was to go flat out for those 20 seconds. Does you know any more and if it has an impact on POTs - I read the article bit it wasn't clear whether HIITs is a part of the Levine program.

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Thanks for the kind words misstraci!

Emma246 - Dr. Levine's protocol was HIIT on rowing machines, but it was for twenty minutes: 1 min on, 1 min off, and I don't think at full intensity. Probably 80-90% of typical max heart rate. When I researched different types of HIIT, I found out that Tabata protocol is the most effective for the heart because it increases anaerobic and aerobic capacity. I wanted to do whatever was most effective, and it just so happens that it is only 4 min, not 20. I still can't commit to doing more than 8 min of cardio. But you do have to go ALL OUT. I have been doing it on the rowing machines, and haven't quite gotten to 100%, but have been improving each time.

When I recover afterward, I try to stay upright for as long as possible, walking on a treadmill for a couple of minutes. But sometimes I have to lay flat to get my heart rate back down.

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Thanks - this is really helpful as I am just at the beginning of starting to exercise again.

So - you do 4 minutes with any breaks? Is it 1 minute on and 1 off?

On the program last night they showed this had a big impact on insulin and helped the body control sugar and thereby delay potential diabetes even after a short program of exercise.

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I despise exercise and PT primarly because with EDS I end up with yet more hospital bills and doctor bills for what happens when I carefully do as I'm told.

It's a broken record - feel bad -- go to PT -- tell PT your limitations -- PT says do this anyway -- you try -- you go to the doctor for imaging and injections because you injured yourself by something as little as ten minutes on an eliptical - and lifting a 2 pound wt. a few times.

My latest try in the battle that began 2008 was to once again hire a trainer and do some work - I was in bed for a couple of days each time with pain and the difficult mobility due to the pain and the issues causing the pain that cropped up 2 days post exercise each time.

On my own I took to an hour three times a week of cardio - then came the weights .... even on lowest setting with the trainer holding my hand the entire way on the machines - I really became a mess.... and haven't been to the gym since. Micro-tears? who knows - lots of theories why this happens - neuropathy may play a hand too

Went to my doctor and shared my story which bought me PT again... A never ending cycle - so now we wait in anticipation for someone who supposedly understands EDS and dysautonomia - if I had a nickel for every PT that nodded as if they understood - yet still kept me to their 'pre-determined' PT for whatever body system needs help the most that month - and then I was set waaaay back for their knowledgeable 'help' - I'd be wealthier than my situation now.

I know I'm not alone in this - and I know if it wasn't happening to me I would not barely believe something so little can literally have you bed bound (for me pain more than vasomotor issues or OI issues)....

But it really doesn't stop me from trying... the last suggestion was 15 min. a day on eliptical and that's it. End of story. Well that and go to PT as well... I am getting a PT phobia it seems - because I want to trust - and my desire to please the PT and not be a problem patient is probably a bit too great. I should be more detached and just stand up for myself if I know something will worsen my issues ... which has me wonder why go to PT at all? If they say 'do this' and I know doing that will have me with a serious limp for a few days - and I get the courage to stand behind a flat out NO - I will not do that because ______ <--- fill in the blank. Yet I usually will try for trying's sake and to keep faith that maybe this time a window will open - maybe this time the miracle will happen!

Probably is no miracle to be had - so I will again today do my 15 to 20 min on the eliptical and pat myself on the back for doing it - though inside I'm a screaming mess of frustration. The desire is there -- but a lifetime of 'issues' with exercise has me interiorly keep it at an arms distance away....but I can't hold that arm up for long because the shoulders are so severely arthritic and the rotator cuff tears and severe tendinopathy make that impossible lol... & - we - begin - again :-)

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Emma, the tabata protocol is 20 sec full out, 10 sec rest, and repeat 8 times. There's lots of suggestions online about what workouts to do, but I found rowing machines to be easiest for me because it provided good cardio and strength training without my heart rate skyrocketing. Also, if you haven't been exercising it is probably not good to start with it. I built up my strength and cardio for two months before trying it.

Nowwhat, I seriously sympathize. I don't have EDS, but I do know that before this year I could never commit to exercise because it always ended badly. This time around, for me, listening to my body and sticking to my gut is the key. I know doing more than 8 min of cardio and 40 min total of working out will kill me for about a week, so I won't go over that no matter what anyone tells me. Luckily my personal trainer is awesome about letting me do 30 sessions, even though his policy is usually one hour. We do strength training with one min cardio intervals scattered in between sets. After the 30 min sessions I do cardio for 8 min. He always tells me to do ten, but I won't until I know I am ready. Good luck, I hope you find something that works for you!

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