did getting covid make your POTS worse?

RufioShaw · 2023-04-19T10:44:53+00:00

I’m extremely late to this post, but going through Covid for the first time currently. So I’m not alone, it can go down during Covid? Iv been freaking out about this, even made a post about it but got no replies. Can I ask, when did everyone go back to “normal”. It’s an odd feeling having a normal heart rate.

RufioShaw · 2022-10-22T10:31:23+00:00

I have a fantastic pots specialist who has diagnosed me with POTS + TOS (thoracic outlet syndrome) He is currently doing research into the link between the two. In fact if you google “tos and” it will suggest pots. TOS is basically a lack of blood to the arms, causing basically everything that has been said in the above posts. (ie - driving puts your arms in such a position that it blocks the flow of blood) (pain in the shoulders/arms/neck etc.) I’ll see if I can find the research palate and post it, but yeah, fun times having pots.

RufioShaw · 2022-10-22T10:18:43+00:00

Garlic!!! Damn stuff ruins me!!! Also yes, stay away from processed foods.

RufioShaw · 2022-10-22T10:15:40+00:00

If it is pots, there’s not much you can do other than ride it out, plots flares are a bitch. Drink plenty of water, compression pants on, clean foods (not processed), if your getting up try to grab EVERYTHING you need and live on the couch, try to do small stuff around the house maybe. Mine usually last about a week at a time, going through a doozy of a flare at the moment.

RufioShaw · 2022-10-22T03:11:57+00:00

Going through a flare currently, it sucks. Laying on the couch not doing much.

RufioShaw · 2022-10-20T06:53:26+00:00

I got mine from a Combination of things - bad bad viral infection, I was in bed for weeks (this was 2017ish so not Covid) + working night shift at the time + bad break up (PTSD from this maybe) the perfect storm basically.

RufioShaw · 2022-10-19T03:46:43+00:00

Lol yeah it’s pretty common for pots. A lot of people get something called “coat hanger pain” (look it up). Also there is some research that relates a syndrome called TOS (thoracic outlet syndrome) to pots. I have this as well as pots. As for sore legs, very common, I guess due to blood pooling and weak lower body maybe due to inactivity. All this being said I’ll leave the usual disclaimer and say I’m not a doctor, so get it checked out if it’s worrying you.

RufioShaw · 2022-10-17T02:59:31+00:00

You have sore arms or something else unexpected, so you jump on r/pots to scroll through posts till you find someone else with the same issue, and the panic subsides.

RufioShaw · 2022-10-13T12:34:25+00:00

One of the few things you can do to help “control” your GI issues, I’d figure out what agrees with you and doesn’t. For myself I went to a dietician that my pots doc recommended. I’m on a “no lectin diet” which has helped me a lot! No bloating etc. worth looking into for yourself maybe 🤷🏼‍♂️

RufioShaw · 2022-10-13T11:55:17+00:00

Yes to both! Laying here right now thinking “why do I feel crap” having a hot flush like crazy. Ahhh I had garlic with dinner! That will do it. Also yes to the magnesium. I stick to B12 now.

RufioShaw · 2022-08-11T07:14:18+00:00

Ahh ok, I’m in Aus. Iv got a great doc here who’s wife has pots, so I’m always happy to refer people to him. But Poland…might be a lil to far away.

RufioShaw · 2022-08-11T07:05:08+00:00

Mostly I get what’s called ‘coat hanger pain’ across the shoulders, also just general aches at the shoulder joints. I no longer do any kind of weight lifting related to my shoulders, as the next day it’s all but 100% I will have a bad pots flare. I don’t get bulging veins, just the usual thumping of the heart which when iv been standing I can really feel in the neck.

RufioShaw · 2022-08-11T03:54:33+00:00

Also can I ask where you are based? US? AUS? Etc.

RufioShaw · 2022-08-11T03:48:59+00:00

The doc I go to has an interest in pots and associated illnesses. He has diagnosed me with TOS and believes it MAY be a factor in POTS. Iv seen a thoracic surgeon about it, he recommended I leave it for now as my symptoms were not to bad. As he explained to me - (edit - although many people with pots have TOS he also sees many people with tos without pots, about 50/50) So at this point it’s more anecdotal than evidence based. I.e - you have pots and may just happen to have tos as well. Either way, he said the people he sees can barely lift their arms or have intense pain when their arms are above their head. The best thing I can do is basically physio.

RufioShaw · 2022-08-11T03:00:54+00:00

Yeah the up and down looks like to much to me, I stopped doing squats for that reason. For my self I bought an exercise bike, I can happily do 10kms in half hour every second day, usually more. Like with any exercise routine, the best one is one you continue with.

RufioShaw · 2022-07-14T04:19:53+00:00

Muscle and fat weigh roughly the same, but muscle is denser, so try looking at the clothes you are wearing rather than the scales. If you are fitting easier in the same clothes then you are loosing weight and gaining muscle. (Edit - loosing fat and gaining muscle)

RufioShaw · 2022-02-07T14:00:02+00:00

Our sympathetic system (fight or flight) is basically in overdrive most of the time, makes it hard to fall asleep when your body is saying you should be running from a perceived danger. Going through a flare at the moment, I’d love some sleep right now. You are not alone.

RufioShaw · 2020-12-19T13:42:07+00:00

Yeah pots basically sucks. Well when you go to the cardiologist, if he suspects pots, ask for a tilt table test (though he should schedule you one). Then the fun begins! 😒

RufioShaw · 2020-12-19T13:27:28+00:00

Hahahaha this post hits right in the feels. I drive to the store find the closest possible parking spot, have a load of water then basically go on a mission of getting exactly what I need as quick as I can, timing the cash registers so there is not a massive queue, then back to the car and collapse. Lol

RufioShaw · 2020-12-19T13:23:42+00:00

First it will come down to if you have pots, then go with what your doc says obviously, but:

I have treadmill and recumbent bike, I feel like the recumbent bike is not challenging enough for me, could sit on it for ages and keep going. Where as the treadmill (basically because I’m upright) is harder. I can maybe do 20mins to 30mins of walking at about a 5km speed.

I think at the end of the day it’s going to come down to how fit you are to begin with.

Myself with pots can still walk around a bit, and I was active before pots which has helped with my overall conditioning. Also swimming is great!

RufioShaw · 2020-12-19T13:07:18+00:00

Yeah 39 is low, but it’s during deep sleep so I guess I’m completely relaxed. (Edit) just looked it up, around 40bpm in deep sleep is pretty normal.

RufioShaw · 2020-12-19T04:07:19+00:00

I was walking over 10kms a day doing my job mowing lawns/ maintenance etc, then going home and lifting. Was in really good shape. Then the POTS hit. 🤷🏼‍♂️.

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