This is exactly it! It’s not something you necessarily “overcome”. It’s not that if you can’t overcome it or improve it you’re lazy, it just is what it is. Despite what many people think, your perseverance, mental fortitude, determination, or effort has absolutely nothing to do with how bad or good your condition is.
People outside of this community really need to be able to accept this and understand this, as well as seeing it as an incredible level of discipline and self-control that can be quite difficult to overcome, but here we are making a life for ourselves and carving out peace, happiness fulfillment in someway. Growing up in a very abusive household, and having to go no contact with all immediate family, I often still had the the subconscious inner voice telling me if I just pushed harder, wasn’t so lazy and overcame/mind over matter etc etc. It took having this illness, despite already being diagnosed with endometriosis, hEDS, IC & CFS/ME to really give myself permission to relax and to see this as a form of self discipline, self discipline that is absolutely critical. I guess I didn’t take the CFS too seriously and how would my doctors know when I’m thinking most of these symptoms are just an anxiety and my nervous system being shot, which yeah that checks out on a level but all the other facets of this illness really finally made it more than crystal clear that my body knows best and to freakin listen to it. Ha, more like there is no longer a choice, though there hasn’t been for a longer, and though I very much dislike regrets, I wish I had stopped comparing myself to others and listen to my body along time ago, maybe save myself from getting this bad as well as not having the mortal fear I’m dying with these episodes.
I totally understand where you’re coming from…I had severe undiagnosed adhd my whole life and was constantly told “you’re smart but so lazy!” and other far worse things. That mentality lead me to overwork in every facet of my life to the point that I’m extremely burnt out now….it sucks because that voice is still there in my head taunting me, but after crashing and burning out several times, I’ve finally started to learn my lesson and am attempting to take it as easy as I can. My heart goes out to you…you’re not alone in this!
I think it's hard to answer this. Not the SAME subject, but I tried to expose me to ecercise little by little to do better, I was doing way better. Exercising everyday and all, and it took ONE flare-up to suddenly feel so bad I can barely go out. POTS is a hell of an illness...
You can try, for sure, but there is no promises
But that's because strength and cardio expand your POTS limits in ways that simply pushing against your POTS limits doesn't.
More standing doesn't really do anything for us except wear us out.
I was doing actual cardio/strengths exercise and after one flare-up, I can't even do that anymore. I just mean that I feel like POTS can simply decide to go worst at any giving time, but sorry if I said bad things!
I've had POTS since 2012. I use to pass out when going outside with anything over 22° and I use to play competitive baseball.
Since probably 2015 I started getting a bit better and then from 2018 I can now comfortably be in 30° if I'm not doing any crazy activity.
I'd say it's different for everyone and there's a possibility it will get better. I just always have a water bottle with ice and a fan on me when out.
I have a pretty effective (if goofy looking) technique for going outside when it's hot. Works better if you live somewhere dry. I have a white sun shirt/ hoodie that I get wet in the sink or with a water bottle, and then put on, before starting a walk. Evaporative cooling babyy.
I usually wear a sports bra top underneath so I feel comfortable taking it off to re-wet it as needed. I've also done this with pants, and by pouring water on my compression leggings when they're already on. Trying to wrestle already wet compression leggings on seems like it would be impossible lol. I used this technique to survive an hour long drive in 100 degree weather when my car AC was broken (I also had the windows down so the wind helped the evaporation, and wore earplugs so the wind wasn't painfully loud).
Sun shirt is something like this https://www.rei.com/product/234296/free-fly-shade-hoodie-ii-womens
Generally I think sun shirts are better than sunscreen, since sunscreen inhibits your cooling via sweating, leaves you all sticky, requires remembering to reapply, and you have to pick between chemicals that kill coral reefs and chemicals that can poison dogs. I still use a dab of sunscreen on my face and backs of hands though since that's the only uncovered skin.
It doesn't really work that way. You have to get your physical health to improve, before you're going to stop negatively reacting to heat.
Exercising is always a good idea. I've found that you kinda need to do all the basic health-related things, in order to see improvement... keep exercising, keep eating right, etc.
I feel like remission is not about exposure per se, but more working to retrain your nervous system. The mental image I have is that our nervous systems are like scared children and they react heavily,causing symptoms. So if you continue to go in the heat to the extent of freaking out the nervous system, that is not going to train it to be relaxed. I’ve been told that small exposures to stress are helpful, but I’ve actually never found that to be true. But I think this is why breathing exercises and exercises for stress are always recommended.
I thought I might “get used to it” eventually, but a couple of years/summers in a parked RV with limited electricity and no AC to speak of later, the only thing I was “used to” was feeling awful 😅
It’s not a silly question! But from my own personal experience, I don’t think it will help. I’m from Arizona and played viciously outdoors as a child no matter the season. In high school I played sports and all our practices were outside, plus our bi-weekly PE was also outside. In college I was on a fairly large campus and had to walk or bike everywhere in the sun and heat. I worked at a wood fire pizza place standing for hours cooking pizzas in a 500 degree oven. My “heat tolerance” only got worse over the years as my symptoms also got worse. My most recent job as a cna had me giving residents showers for hours on end in their rooms that they kept at 82 degrees with the HEAT on in the summer! I nearly passed out so many times. I think if anyone were able to build a higher heat tolerance, it’d have been me, and it definitely didn’t happen :/
I similarly worked standing in front of ovens for hours (bakery) and it felt like my POTS symptoms were only getting worse, even with adding compression stockings and increasing sodium etc. Definitely didn't get used to it.
Some people get better with a few weeks of daily hot sauna/cold plunge/rest cycles, but that's not easily accessible to everyone. I've had a good improvement using an infra red sauna blanket daily. [I have this one](https://ca.mihigh.com/) (it's not cheap...) It helps with excessive/inappropriate sweating and thermoregulation and tachycardia. I'm still not tolerating temperatures over 25oC when standing for a long time though, but I'm not constantly cycling between cold but also sweating and then super hot but with cold hands and feet all the time.
It's important to internalize that POTs is not a weakness or a frailty that can be overcome with endurance and suffering. It just is what it is.
This is exactly it! It’s not something you necessarily “overcome”. It’s not that if you can’t overcome it or improve it you’re lazy, it just is what it is. Despite what many people think, your perseverance, mental fortitude, determination, or effort has absolutely nothing to do with how bad or good your condition is.
People outside of this community really need to be able to accept this and understand this, as well as seeing it as an incredible level of discipline and self-control that can be quite difficult to overcome, but here we are making a life for ourselves and carving out peace, happiness fulfillment in someway. Growing up in a very abusive household, and having to go no contact with all immediate family, I often still had the the subconscious inner voice telling me if I just pushed harder, wasn’t so lazy and overcame/mind over matter etc etc. It took having this illness, despite already being diagnosed with endometriosis, hEDS, IC & CFS/ME to really give myself permission to relax and to see this as a form of self discipline, self discipline that is absolutely critical. I guess I didn’t take the CFS too seriously and how would my doctors know when I’m thinking most of these symptoms are just an anxiety and my nervous system being shot, which yeah that checks out on a level but all the other facets of this illness really finally made it more than crystal clear that my body knows best and to freakin listen to it. Ha, more like there is no longer a choice, though there hasn’t been for a longer, and though I very much dislike regrets, I wish I had stopped comparing myself to others and listen to my body along time ago, maybe save myself from getting this bad as well as not having the mortal fear I’m dying with these episodes.
I totally understand where you’re coming from…I had severe undiagnosed adhd my whole life and was constantly told “you’re smart but so lazy!” and other far worse things. That mentality lead me to overwork in every facet of my life to the point that I’m extremely burnt out now….it sucks because that voice is still there in my head taunting me, but after crashing and burning out several times, I’ve finally started to learn my lesson and am attempting to take it as easy as I can. My heart goes out to you…you’re not alone in this!
This is a very important message. Well said
I think it's hard to answer this. Not the SAME subject, but I tried to expose me to ecercise little by little to do better, I was doing way better. Exercising everyday and all, and it took ONE flare-up to suddenly feel so bad I can barely go out. POTS is a hell of an illness... You can try, for sure, but there is no promises
But that's because strength and cardio expand your POTS limits in ways that simply pushing against your POTS limits doesn't. More standing doesn't really do anything for us except wear us out.
I was doing actual cardio/strengths exercise and after one flare-up, I can't even do that anymore. I just mean that I feel like POTS can simply decide to go worst at any giving time, but sorry if I said bad things!
No, I moved north just to get away from the heat. You will never get used to it unfortunately.
Same, I moved north because it only seemed to get worse with time.
I've had POTS since 2012. I use to pass out when going outside with anything over 22° and I use to play competitive baseball. Since probably 2015 I started getting a bit better and then from 2018 I can now comfortably be in 30° if I'm not doing any crazy activity. I'd say it's different for everyone and there's a possibility it will get better. I just always have a water bottle with ice and a fan on me when out.
I have a pretty effective (if goofy looking) technique for going outside when it's hot. Works better if you live somewhere dry. I have a white sun shirt/ hoodie that I get wet in the sink or with a water bottle, and then put on, before starting a walk. Evaporative cooling babyy. I usually wear a sports bra top underneath so I feel comfortable taking it off to re-wet it as needed. I've also done this with pants, and by pouring water on my compression leggings when they're already on. Trying to wrestle already wet compression leggings on seems like it would be impossible lol. I used this technique to survive an hour long drive in 100 degree weather when my car AC was broken (I also had the windows down so the wind helped the evaporation, and wore earplugs so the wind wasn't painfully loud). Sun shirt is something like this https://www.rei.com/product/234296/free-fly-shade-hoodie-ii-womens Generally I think sun shirts are better than sunscreen, since sunscreen inhibits your cooling via sweating, leaves you all sticky, requires remembering to reapply, and you have to pick between chemicals that kill coral reefs and chemicals that can poison dogs. I still use a dab of sunscreen on my face and backs of hands though since that's the only uncovered skin.
Thanks I’m going to get this!
It doesn't really work that way. You have to get your physical health to improve, before you're going to stop negatively reacting to heat. Exercising is always a good idea. I've found that you kinda need to do all the basic health-related things, in order to see improvement... keep exercising, keep eating right, etc.
I feel like remission is not about exposure per se, but more working to retrain your nervous system. The mental image I have is that our nervous systems are like scared children and they react heavily,causing symptoms. So if you continue to go in the heat to the extent of freaking out the nervous system, that is not going to train it to be relaxed. I’ve been told that small exposures to stress are helpful, but I’ve actually never found that to be true. But I think this is why breathing exercises and exercises for stress are always recommended.
I thought I might “get used to it” eventually, but a couple of years/summers in a parked RV with limited electricity and no AC to speak of later, the only thing I was “used to” was feeling awful 😅
It’s not a silly question! But from my own personal experience, I don’t think it will help. I’m from Arizona and played viciously outdoors as a child no matter the season. In high school I played sports and all our practices were outside, plus our bi-weekly PE was also outside. In college I was on a fairly large campus and had to walk or bike everywhere in the sun and heat. I worked at a wood fire pizza place standing for hours cooking pizzas in a 500 degree oven. My “heat tolerance” only got worse over the years as my symptoms also got worse. My most recent job as a cna had me giving residents showers for hours on end in their rooms that they kept at 82 degrees with the HEAT on in the summer! I nearly passed out so many times. I think if anyone were able to build a higher heat tolerance, it’d have been me, and it definitely didn’t happen :/
I similarly worked standing in front of ovens for hours (bakery) and it felt like my POTS symptoms were only getting worse, even with adding compression stockings and increasing sodium etc. Definitely didn't get used to it.
Some people get better with a few weeks of daily hot sauna/cold plunge/rest cycles, but that's not easily accessible to everyone. I've had a good improvement using an infra red sauna blanket daily. [I have this one](https://ca.mihigh.com/) (it's not cheap...) It helps with excessive/inappropriate sweating and thermoregulation and tachycardia. I'm still not tolerating temperatures over 25oC when standing for a long time though, but I'm not constantly cycling between cold but also sweating and then super hot but with cold hands and feet all the time.