Why exercise with dysautonomia is hard

If you’re living with dysautonomia, you’ve probably been told to exercise to improve your predicament. However, it doesn’t always work out that way. Here’s my story of why exercise with dysautonomia is hard.

Previous Spesh set me on a routine of daily cardio to grow my blood volume and recondition me and my muscles back to health.  At least, that was the plan.

Here’s a bit of before and after of what has resulted:

For six months I tried following Spesh’s plan.  Diligently putting on my bike helmet as many days as I could muster and cycling down by the river for about 10-20 mins at a time.  Followed by the mandatory recovery (aka collapsing) on the bed for a good half hour afterwards to allow my blood to flow through my pipes and do its thing.   Going too fast some days and having to cut back the next.  I haven’t been some wimp, I have persevered, really I have.

My last attempt at riding a bike some years ago resulted in chuck central and feeling seriously dodgy at the top of a rather large hill  (and I thought it was just the hangover!).  So as lovely as it was getting out and about, I’ve been pestered by flies more times than I could mention (they like sweat and evidently I do a bit of this), I have regularly given myself si joint and knee issues as I wobbled my way there and back and I have generally fatigued myself rotten for the rest of the day.  Boo.

A different approach was required and intuitively I knew I had to listen to what was my body was telling me to do!

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So what have I learnt?

Well, for me at least, cardio appears not to be appropriate.  It seems to have kept this body of mine propped up in a yoyo state of being revved up one minute and fatigued the next.  It has most definitely exacerbated my intolerance of anything postural and exertion/stress related (standing, sitting, talking, laughing, excitement, apprehension, watching action movies!).

How do I know that?  Well, since stopping the cardio, I have to say, my tolerance levels to the aforementioned stuff have gone up!  What do you know.  Stone the bloody crows.

In view of the fact I’ve never been much of a cardio lover (and am now getting to understand perhaps why) I think we can safely say it just doesn’t suit me and this particular variation of the “thing” I have.

In fact, new Spesh (Dr Cardiologist), who I’ve seen more recently, suggested that any form of upright exercise for someone with neurally mediated hypotension or syncope (which is one of the things he thinks I have) is a no go. Until we can get my blood pressure under control then I should not be doing it.  So there was good reason, for me at least, why exercise with dysautonomia is hard. Hooray how’s that for vindication!  Apparently, there’s some sort of short circuit that happens for people like me when adrenaline rises that causes their bp to drop out in a big way.  Makes a lot of sense now he’s said that!  Kind of glad I trusted my body and took its cue now!!

So what exercise are you doing you say?

Recumbent gentle exercise, like pilates, is the out and out winner (far less revvy but still tackling my core muscles).   It all needs to be at home so I can lie flat afterwards for 30 mins or so until I recalibrate, followed by a slow, gentle rise afterwards.

I haven’t found anywhere externally that will allow me this luxury plus I happen to think I might feel a little self conscious and look a complete loser lying down at the gym or the pilates studio!  Pass.  Doing it at home also costs me nothing and is more in keeping with the small budget we now live on.  Woo win win.

So cardio, no hard feelings, we tried to make it work, it’s not you, it’s me – really, it’s me.  I need to let you go.  Sorry but you’re officially fired from my life.  And I think perhaps forever.  You are not good for me.

There are far better specimens than me for your talents who really will appreciate you more.  You will make such a difference somewhere else.  I know you will.

Take care of yourself and all the best.


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