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Struggling - anyone else must keep moving ?


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Urfffff. I've been really struggling the past few weeks. My resting BP is 80/40 at times and my pulse between 50 - 62. I feel so weak and tired. I have to keep on moving to raise my pulse or I sink into a faint weak state. My last 24 hour BP reading 3 months ago led to a diagnosis of inappropriate sinus tachycardia as all readings other than while asleep were over 100, but that seems impossible now as my pulse is low. Anyone else have these extreme swings ? I felt so much better then than now. 

If I move about it raises my pulse - but not my BP - and I feel a bit better for say 30 mins then I have to keep on moving again. 

I can't get to see my cardiologist due to C-19. 

Any tips to help this problem ? I am not on meds, only on high water intake, salt, and snack sized 'meals'

 

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Hi.  I have no advice but I can empathize.  I have to move constantly.  Unfortunately since I can't be upright for more than a minute or 2 this means I have to rock in my chair or move my legs.  I'm also not on meds (was prescribed a beta-blocker and then told not to take it by the nurse because of my low resting pulse).  I don't find that water or salt helps me in any way.  

With covid I think I have become even more deconditioned than before as I don't leave the house or force myself to do anything and it's really affecting me, but then starting to move and be up more seems harder and harder the longer I'm down.  I can't even shower standing up these past few weeks and starting to feel really depressed that I'm never going to get better.  I'm in a near constant state of panic lately and would welcome any time I could spend relaxed but I just can't seem to get there.

I hope this passes quickly for you!

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Oh love. I hear you on the panic. It feels like a constant battle to keep anything functioning. A foot wrong and it all comes tumbling down - if it wasn't already down there, smile. And the deconditioning happens so quickly, for me it's even a few days. I live in constant fear that "this is it" and that I will remain like this forever or get worse. But we will get better, bit by bit. We have done it before and can do it again. Hang on in there. You're in my thoughts. I know how hard it is, and thank you for giving me support. 

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Hello,

Yes. I often feel better if I move and sink into a torpor from sitting or standing.

At least I can go for long walks even when I feel bad. It is a strange way to be ill: no matter how bad I feel, I can almost always feel better by continuing to move.

I had a strange experience last summer. I went for a hike on the Devil's Path in New York. It is among the top 10 hardest public hiking trails on the East Coast. My hiking partner does not have POTS and does not really know about my condition (I think I've told him: sometimes I get dizzy and I take medicine for it). Devil's Trail takes several days for an experienced hiker and it is mostly like walking up (or down) a flight of stairs. So imagine walking up and down stairs all day, but with a 20-lbs backpack containing a tent, sleeping bag, and water on your back.

When we started out I was SCARED because I felt dizzy and was greying out. For the first 5 hours as we walked along flat ground from the car to the start of the trail (we left our car at the END point and then planned to HIKE along flat public road to the start, then hike the trail back to the car). 

But by the second day, I was doing well and my FRIEND was struggling! Really badly. I think he was in danger of heat stroke. Long story short: we ran out of water and he was dying of thirst. I was really quite fine. We ditched the trail at the end of Day 2 and went home 1 day early.

So what is going on there? I can barely focus at a computer during the summer - needing to get up and move around and being almost incapable of focusing. I drink coffee or take stimulants to break the topor and then end up bouncing from website to website or doing stupid things and not focusing. But....I can GO GO GO on my legs like some kind of pack animal.

I guess it is just a lucky thing. My therapist says: be grateful for what you have. Focus on the positive: you can walk. Lots of people with chronic health conditions cannot walk. So that is a great thing. I suppose if I ever lose my job and become completely unemployable I could get disability and then just hike the country forever like Forest Gump did.  In fact, I wonder if some of the homeless people we see who are just perpetual vagrants are people with POTS. They can't hold jobs because they can't sit or stand and focus, so they just keep moving. Hard to say. 

Take care of yourselves, everyone. 

 

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