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Anyone experienced Covid with POTS or EDS


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Hi,

I'm trying to ease my mind or see if anyone has experienced the Coronavirus and has POTS or EDS. I've read the boards, and posts by the doctors, but the last post I saw was from March/Aprilish. This is all still so scary. My doctor won't allow me to go back to teaching in the fall because I live in Florida and it's become a major hotspot. I totally understand where my doctor is coming from, but now I have to find a new job. I work for a small private school and no one chose the option of distance learning. The children also won't be wearing masks so that was another concern. To be honest, I am just scared because if I get this virus really no one can predict the outcome. 

I appreciate your time and any advice you can offer.

Thank you,

Kristin 

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Kristin  , I’m awaiting a disability now to be approved. I am also a teacher in Texas, another hot spot. I have been off on disability since October 2019 with a mystery illness that turned out to be POTS that I just got diagnosed with. I would like to go back because I need a job, but I probably will not since I still do not feel I can perform my job duties. I’m also high risk because of age. My small Texas city is surging right now. I do know a colleague that had several staff members with COVID 19 but she did say they recovered.One was very sick. I’m sure they don’t have POTS though. Nobody knows about POTS in my small Texas city!! Not even Drs or ER.  I’m very scared to go back I also have my 89 year old mother living with me. I know a lot of schools in Texas are only doing remote the first 4-8 weeks. I already feel bad so I can’t imagine getting COVID on top of POTS. I have heard some teachers that are starting their own business of tutoring and being available for remote tutoring for students learning at home and to give students support. I would also check out remote learning teaching jobs . There has to be jobs out there for teachers. I know so many teachers that are really scared to go back too.I haven’t experienced COVID , thank goodness !!! This is when I wish I worked for google they are working remotely till the end of  2021 . I hope this helps .😃

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I've been applying for virtual positions and I have an interview tomorrow. I'm very excited 😁 I guess my fear is also that if I happen to get Covid that it'll be a very bad outcome. So I was wondering if any others had experienced someone with POTS/EDS and Covid.

I'm sorry you are having issues finding doctors. It's so frustrating. It took me 2 years to get diagnosed with POTS and about 9 to find out I have EDS also. Craziness. I'm sorry you are having to go through all of this as well.

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I assume you saw this:

https://www.dinet.org/forums/topic/31200-statement-on-covid-19-and-cfsoi/

I think many of us are concerned about the unknowns regarding POTS and COVID-19.  I think it is good your dr doesn't want you in a classroom.  I would hope that any doctor would recommend against any patient being in a classroom without masks in the middle of a severe outbreak.  People without any known underlying conditions are having serious complications, and it seems right now hard to predict. 

The CDC has a list of conditions that are known to make severe illness more likely as you probably know:

https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html

Nothing like POTS is in this list but unfortunately until a lot more data is collected a full understanding doesn't exist.  

I think another concern is the long term impact of the virus.  Since many of us have flare ups when we have any kind of inflammation, this virus is IMO likely to cause POTS flare up for many of us, and I worry for myself, it could be a long-lasting flare up, at the very least.

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On 7/27/2020 at 6:23 PM, Hershey said:

Hi,

I'm trying to ease my mind or see if anyone has experienced the Coronavirus and has POTS or EDS. I've read the boards, and posts by the doctors, but the last post I saw was from March/Aprilish. This is all still so scary. My doctor won't allow me to go back to teaching in the fall because I live in Florida and it's become a major hotspot. I totally understand where my doctor is coming from, but now I have to find a new job. I work for a small private school and no one chose the option of distance learning. The children also won't be wearing masks so that was another concern. To be honest, I am just scared because if I get this virus really no one can predict the outcome. 

I appreciate your time and any advice you can offer.

Thank you,

Kristin 

I had a fever of 101 for a day and maybe 100.4 for a few days. I realized this only because I started to feel cold.  2 days after the fever, my sense of taste completely disappeared and stayed wiped out for about 3 weeks.    Luckily it didn't hit me hard or trigger any of my POTS symptoms.  This was really surprising to me, since I have post-viral POTS anything that goes on with my body usually triggers my symptoms.   (I have very mild symptoms now, don't need meds but sometimes have to spend a day or two in bed during a flare. ) Also there are a bunch of articles of people getting dysautonomia post-COVID,  so I assumed mine would get as bad as I had it as onset.  For whatever reason I totally lucked out.   You may or may not have the same reaction as me.  If you follow the guidelines - stay away from people as much as possible and wear a mask if you really need to go out - that greatly reduces your chances for getting it.  If you do that there is probably much less reason to worry

 

 

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@yogini - I am happy to hear that you made it through COVID without a flare!!!! I never felt POTS puts us at an increased risk for COVID related complications but I did expect a flare. Good News!!!!!

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13 hours ago, Pistol said:

@yogini - I am happy to hear that you made it through COVID without a flare!!!! I never felt POTS puts us at an increased risk for COVID related complications but I did expect a flare. Good News!!!!!

Thanks!  Usually when the slightest thing gets off balance - sleep, fluids etc - even when I eat too much - I get tachy.  I am still not sure how I managed to have zero POTS symptoms but I won’t complain!  

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That is great to hear--so glad you got through it OK. 

I tend to get a flare with any infection, even a common cold.  So I expect to have a flare if I were to get sick with this.  

There is research indicating that there may be a relationship between infecting dose and the severity of illness.

https://www.sciencedirect.com/science/article/pii/S1201971220304707

And wearing a mask may protect the wearer from larger doses.

Less severe infections may be less likely to initiate a flare?

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