My Worst POTS Symptoms Right Now

Ever since I had the flu, followed by surgery, followed by a nasty GI bug, my POTS symptoms have been much worse. While there are a lot of possible POTS symptoms out there and I’ve had many at one point or another, here are my worst symptoms right now that are making life more challenging than normal. 

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I think the most difficult POTS symptom I’m dealing with right now is lack of stamina. Everything feels exhausting. Everything feels like a workout. I tire so easily because of it, and it’s really frustrating. 

Just standing in the shower and washing my hair, I can feel my heart beating out of my chest. Going up a flight of stairs has me breathing heavily. Walking my usual route, which has one hill in it, feels more like I’m jogging. This past weekend, after I finished putting fresh sheets on my bed, I collapsed onto it and stayed there for a while. 

I wear a Garmin smartwatch and recently showed my husband a graph of my heart rate for the day so far. I asked him to guess where on the graph I got up out of bed. Can you guess where in the screenshot below? It’s pretty obvious! My husband also wears a Garmin, and we compared my graph to his. He, as someone without POTS, had a much less dramatic rise when he got up for the day. It was barely noticeable. 

Which led me to ask him: “What’s it like to not feel your heart racing after every time you get up?” 

He kind of just shrugged, but I want to know what it’s like to stand up and not feel my body go haywire by the action. I really hate this part of POTS! Even when I was at my very best several years ago, I still felt that bodily reaction to standing to some degree. I’m not sure I’ll ever know what that’s like, unless I go on a beta blocker, but I don’t even have a POTS doctor anymore, so I don’t see that happening any time soon! 

Anyways, beyond the exhaustion and lack of stamina with physical activity, my heart racing when upright and shortness of breath are two other POTS symptoms that I’m struggling with right now. And these symptoms go hand in hand with the exhaustion and lack of stamina. 

As I said before, I get winded super easily right now. Going up stairs causes it. Going on walks causes it. Doing chores around the house causes it. Even light gardening isn’t easy.

However, I will say I’m not quite as bad as I was before my POTS diagnosis, where I was short of breath just standing (like to do my hair or makeup, or prep food in the kitchen). The only exception is showering, and I blame that on the hot water and vasodilation. 

As I mentioned at the beginning of this post, I recently had a gnarly GI bug. I got it literally a day after my endometriosis surgery. It was awful!!! I was hospitalized for two days because I couldn’t keep food or water down. 

Since then, my whole GI tract has felt like it’s been thrown off. Add in the fact that I have POTS and it’s been a world of fun in the GI realm. I’ve been having everything from constipation switching with loose stools, to bloating, to lack of appetite and even still some bouts of nausea at times. It’s been fun. So fun. 

For those of you who aren’t familiar, GI symptoms are pretty common with POTS because of the autonomic nervous system dysfunction associated with the syndrome.

I’m also struggling with terrible anxiety right now. To be fair, I have had a lot of medical things going on in my life as of late that warrant heightened feelings of anxiety. 

But for me, when I feel my heart rate already elevated from POTS, it makes me feel even more anxious because I don’t like the sensation of feeling my heart pounding or racing (or both). It reminds me too much of how I’d feel during an actual anxiety attack! Which makes me more anxious!

Can anyone else relate to having anxiety with POTS? And constantly feeling like you are stuck in fight or flight mode? It’s one of the worst POTS symptoms for me.

To sum it up, here are my worst POTS symptoms right now that are affecting my day-to-day the most:

• Fatigue 
• Lack of stamina for physical activity 
• Fast heart rate while upright 
• Shortness of breath 
• GI symptoms 
• Anxiety 

I’m hoping that the further out I get with my recovery and the more I’m able to exercise again, the better these symptoms will get.

In the meantime, I’m wearing my VIM&VIGR compression socks when I go out shopping or will be standing for a long time. I’m drinking a lot of water and electrolytes with the help of my 40 oz. hydro jug and limiting my caffeine, as I don’t feel like it is as helpful to me right now as it used to be. (I was one of the people who benefitted from the mild vasoconstriction from a little morning coffee. Now, it feels like drinking a cup of anxiety.) 

I’m also trying my best to continue making time for rest and to do calming things, like deep breathing and meditating and carving out dedicated time for things that bring me joy.

One way or another, I have faith I’ll get through this difficult time and come out the other side OK. I’ve done it before, and I can do it again. 

What are your worst POTS symptoms to live with? Do they ever change? Feel free to comment below!

XO, 

Laurie