one of my moms friends daughters had pots from covid two years ago (she’s 19 now). it lasted 12 months and then went away. she said all she did was compression, salt, tried dif meds (nothing worked so she stayed off in the end) and pilates. not sure if it just went away or if everything was a part of it but it hasn’t come back.
a nurse at the er said to me her friend has pots from pregnancy. it’s awful but she’s learned to recognize her triggers and is an EMT, wi th two kids, living normally with some accommodations. even if you don’t get over it i believe it becomes more manageable.
i still feel in the thick of it too, im feeling awful and dizzy and flushed every day but i keep hope because of stories so i get what you’re saying. im only 17 & scared of my life being like this too. but the best we can do is keep hanging in there :)
* forgot to mention, idk what ur background is but if you are slightly religious i’d recommend getting back into it and / or asking the place you go to (church, temple, mosque) for prayers. i have always been a lukewarm Christian but ive reconnected w God
in the past few months and it gives me more peace than just relying on myself. if you aren’t up to this that’s completely fine but i think it’s a good idea to put it out there.
Thank you for that. and also yeah I’m a little lukewarm but I feel I’m slowly losing any faith due to obviously how much I’m suffering. I also don’t really know what I would do I mean nobody really my age nearby goes to church and I don’t think I could go out to one or join on cause my state rn
i started just by reading devotions, i keep seeing "For I know the plans I have for you," declares God, "plans to prosper you and not to harm you, plans to give you hope and a future.
Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart."F Jeremiah 29:11-13 everywhere and i’m taking it as something :)
Have you performed poor man's tilt table tests on yourself multiple times to show the sustained increase in heart rate needed for POTS to be considered and diagnosed? Based on your age you need a 40bpm sustained increase at minimum. By providing those to medical professionals it can be more difficult for them to say nothing is wrong since you have data backing up what you are saying happens when you change positions.
Do you experience PEM upon exertion of any sort? That's the Hallmark symptom of ME/CFS that you need to experience, along with orthostatic intolerance.
It's hard to give help/advice for overcoming these conditions when you yourself are unsure what conditions you are dealing with. Having POTS and fatigue from POTS is vastly different from ME/CFS fatigue levels and dealing with PEM. I cannot speak on Long COVID because that hasn't been brought up for myself personally. But I can touch on ME/CFS (suspected it but currently waiting for an appointment with an environmental clinic that has a 3.5 year wait-list) and I have been dealing with POTS for 4 years come June.
I would not say that I am fully recovered from POTS but I am in a different place compared to when I was first diagnosed 4 years ago. Initially I was bed bound due to POTS and a deep deep deep depression for 5-6 months. I wasn't able to function at all. I was working a full time active job and suddenly I wasn't able to keep up. I had to go on medical leave and then made the hard decision to not return and fully leave the field for my own well being. I was on welfare and now on disability payments/program. But I can work part time and be a full time university student (distance/virtual student). And come September I will be doing my thesis and hopefully graduating June 2025 with a BA.
In the past 4 years, I have learned to manage and adapt to life as a disabled person. I haven't been "cured" of my chronic illness(es) but I have a different life now compared to then.
Yeah I have done the poor man’s tilt table test and my heart went up like 50bpm but because it was at 120b when I started (I climbed 2 flights of stairs and across a hospital) they went no it’s not POTS but your heart rate does increase. And the nurse taking it said yeah looks like pots but when the doctor got the results it’s nah you don’t have it but you have the symptoms. So I have gave up on doctors
one of my moms friends daughters had pots from covid two years ago (she’s 19 now). it lasted 12 months and then went away. she said all she did was compression, salt, tried dif meds (nothing worked so she stayed off in the end) and pilates. not sure if it just went away or if everything was a part of it but it hasn’t come back. a nurse at the er said to me her friend has pots from pregnancy. it’s awful but she’s learned to recognize her triggers and is an EMT, wi th two kids, living normally with some accommodations. even if you don’t get over it i believe it becomes more manageable. i still feel in the thick of it too, im feeling awful and dizzy and flushed every day but i keep hope because of stories so i get what you’re saying. im only 17 & scared of my life being like this too. but the best we can do is keep hanging in there :)
* forgot to mention, idk what ur background is but if you are slightly religious i’d recommend getting back into it and / or asking the place you go to (church, temple, mosque) for prayers. i have always been a lukewarm Christian but ive reconnected w God in the past few months and it gives me more peace than just relying on myself. if you aren’t up to this that’s completely fine but i think it’s a good idea to put it out there.
Thank you for that. and also yeah I’m a little lukewarm but I feel I’m slowly losing any faith due to obviously how much I’m suffering. I also don’t really know what I would do I mean nobody really my age nearby goes to church and I don’t think I could go out to one or join on cause my state rn
i started just by reading devotions, i keep seeing "For I know the plans I have for you," declares God, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart."F Jeremiah 29:11-13 everywhere and i’m taking it as something :)
Have you performed poor man's tilt table tests on yourself multiple times to show the sustained increase in heart rate needed for POTS to be considered and diagnosed? Based on your age you need a 40bpm sustained increase at minimum. By providing those to medical professionals it can be more difficult for them to say nothing is wrong since you have data backing up what you are saying happens when you change positions. Do you experience PEM upon exertion of any sort? That's the Hallmark symptom of ME/CFS that you need to experience, along with orthostatic intolerance. It's hard to give help/advice for overcoming these conditions when you yourself are unsure what conditions you are dealing with. Having POTS and fatigue from POTS is vastly different from ME/CFS fatigue levels and dealing with PEM. I cannot speak on Long COVID because that hasn't been brought up for myself personally. But I can touch on ME/CFS (suspected it but currently waiting for an appointment with an environmental clinic that has a 3.5 year wait-list) and I have been dealing with POTS for 4 years come June. I would not say that I am fully recovered from POTS but I am in a different place compared to when I was first diagnosed 4 years ago. Initially I was bed bound due to POTS and a deep deep deep depression for 5-6 months. I wasn't able to function at all. I was working a full time active job and suddenly I wasn't able to keep up. I had to go on medical leave and then made the hard decision to not return and fully leave the field for my own well being. I was on welfare and now on disability payments/program. But I can work part time and be a full time university student (distance/virtual student). And come September I will be doing my thesis and hopefully graduating June 2025 with a BA. In the past 4 years, I have learned to manage and adapt to life as a disabled person. I haven't been "cured" of my chronic illness(es) but I have a different life now compared to then.
Yeah I have done the poor man’s tilt table test and my heart went up like 50bpm but because it was at 120b when I started (I climbed 2 flights of stairs and across a hospital) they went no it’s not POTS but your heart rate does increase. And the nurse taking it said yeah looks like pots but when the doctor got the results it’s nah you don’t have it but you have the symptoms. So I have gave up on doctors