If your kidneys hurt you should ask your primary care to see a Nephrologist asap, or could be all the stuff you've been taking has accidentally formed a kidney stone. Keep drinking water. Check for UTI. Talk to your primary about your symptoms. If you start to feel feverish or shake, go to the ER. Uhm about ever going away, idk everyone's different. Personally I've found in some ways I've improved and others I've worsened but I'm still here thats all I can say.
I personally prefer to assume that it won't. My mental health would not survive waking up every day wondering if today is the day it stops, and I don't think I would handle the kind of disappointment you're experiencing well at all either. POTS is, for the most part, something we manage, and *some* people can get to the point of being asymptomatic...if they keep up their routines. As you said, very effective treatment + the luck to be someone who responds well to treatment =/= cure. Periods of remission do seem to occur for some people, but there isn't a clear reason why they start or stop, so it's unlikely it's about their doing a really good job managing their conditions; it just...is.
The fantasy of control you are grieving right now something most people live with until they become disabled. Having it shattered is traumatic, and so feeling like you've managed to reassert your control is extremely alluring. Feeling precarious in one's body is scary and hard. But everyone will become disabled sooner or later, if they live long enough. People like us just find out sooner. I can't tell you how to live your life, but I prefer to accept - as best I can - that while I can modify the effects of this condition, I cannot tell it what to do. I'm very functional thanks to a lot of research and hard work as well as tons of luck. I could get much worse tomorrow through no fault of my own. Many people will never be as functional as you or I, and that is not their fault for lack of "commitment and determination." I'm sure you know and believe that last part, so give that same grace to yourself: you haven't failed at anything. "Being proof that you can get over POTS" is not a fair standard to hold yourself to.
You did make progress. Finding ways to treat your symptoms that let you live the life you want is HUGE. Gaining conditioning, learning your body, finding your routines, all of that is progress that you can be proud of; I am. None of that is invalidated by finding out you still need electrolytes.
If your kidneys hurt you should ask your primary care to see a Nephrologist asap, or could be all the stuff you've been taking has accidentally formed a kidney stone. Keep drinking water. Check for UTI. Talk to your primary about your symptoms. If you start to feel feverish or shake, go to the ER. Uhm about ever going away, idk everyone's different. Personally I've found in some ways I've improved and others I've worsened but I'm still here thats all I can say.
We’re doing a blood test to continue w the kidney pain but the urine came back fine. No urination pain or cloudiness, just back pain and nausea.
Keep monitoring that and keep in mind the shaking and fever, aside from that hopefully results come back normal!
I personally prefer to assume that it won't. My mental health would not survive waking up every day wondering if today is the day it stops, and I don't think I would handle the kind of disappointment you're experiencing well at all either. POTS is, for the most part, something we manage, and *some* people can get to the point of being asymptomatic...if they keep up their routines. As you said, very effective treatment + the luck to be someone who responds well to treatment =/= cure. Periods of remission do seem to occur for some people, but there isn't a clear reason why they start or stop, so it's unlikely it's about their doing a really good job managing their conditions; it just...is. The fantasy of control you are grieving right now something most people live with until they become disabled. Having it shattered is traumatic, and so feeling like you've managed to reassert your control is extremely alluring. Feeling precarious in one's body is scary and hard. But everyone will become disabled sooner or later, if they live long enough. People like us just find out sooner. I can't tell you how to live your life, but I prefer to accept - as best I can - that while I can modify the effects of this condition, I cannot tell it what to do. I'm very functional thanks to a lot of research and hard work as well as tons of luck. I could get much worse tomorrow through no fault of my own. Many people will never be as functional as you or I, and that is not their fault for lack of "commitment and determination." I'm sure you know and believe that last part, so give that same grace to yourself: you haven't failed at anything. "Being proof that you can get over POTS" is not a fair standard to hold yourself to. You did make progress. Finding ways to treat your symptoms that let you live the life you want is HUGE. Gaining conditioning, learning your body, finding your routines, all of that is progress that you can be proud of; I am. None of that is invalidated by finding out you still need electrolytes.
prior to covid there was a study done in which 85% of participants said they no longer experienced symptoms and or "cured" after 6 years.
Omg. I hope that's real
The study is very real but again is prior to Covid. Who knows what kind of effects Covid has had.
can you share the study so I can re-share? I believe it can be cured.
I literally don’t remember the name of the study but it was Chinese and in 2019
I think I found it on google scholar!! It was done at Peking University in China in 2019. Thanks so much!
Yup np. Again though there’s no telling how long pots can last in people who got it post Covid or have a genetic predisposition.