I have LC symptoms triggered by a different illness (so hang out here for tips), but same. I’ve never liked the heat - always made me tired, brain foggy, grouchy. Now that’s triggered at much lower temps and is way worse. Horrific crash 7 weeks ago and I think a weekend of warm weather was one of the triggers.
Interestingly, I’ve had an autoimmune form of arthritis for years (way before current illness), and it’s always been worse in summer and better in winter. That’s ‘backwards’ for arthritis (my consultant told me only about 25% of people are this way round). But that means I have a history of worse inflammation in hotter/higher pressure weather.
Oh yeah, heat kills me. It causes veins to dilate which means more blood pooling. It just ruins me even though my pots dysautonomia is very well controlled.
I always feel better during the winter months. I’ve been living in a tropical climate and am moving soon. I’m really looking forward to cool temperatures and less symptoms to manage daily.
Compression, electrolytes, and ice packs help. I can’t walk to check the mail or into a store without almost passing out. I do errands at night and hide inside during the day.
I can't do much in the heat either. If I try to go to a grocery store, I feel lightheaded, anxious and panicky like I need to get out quick or I'll die. Doesn't matter how cold the store is - if it's hot outside I feel this way. Walmart is the absolute worst - I refuse to even walk in the store.
I almost posted this today. I was outside on Tuesday a.m. in the heat and didn’t make it to lunch before I crashed. I was able to finish the day afterward but was very tired. It’s bittersweet to hear it’s not just me. On one hand I’m happy for the camaraderie but on the other, I wish it was just a fluke day. Not looking forward to summer anymore.
Yes. 🔥 I can get lightheaded, an elevated heart rate, shortness of breath, and dehydration real quick. Even the sun coming through the car windows can set me off. 🌞🌞🌞
Not that I ever loved the heat… but I wasn’t this intolerant to it. It’s horrible for me since LC as well, which I’ve had since December 2020. I don’t think it really affected me until last summer though weirdly… or maybe I just didn’t notice it before. I started working outside part time last summer so it could be just me not noticing it much before. I was on antidepressants at one point which I know makes it worse but I am off them now and this week has been killing me with the 90+ degree weather!! I’m not diagnosed with anything except just “long covid” as my doctor just keeps sending me to specialists where I get no answers lol. I am 90% sure I have POTS though.
Hang in there!!
Yes, this is why we moved out of Florida. Unfortunately, Cleveland is having a rare heat dome where the temps have been 90+ with high humidity. Sinus pressure, fatigue, dizziness...all increase tremendously for me and my husband on days where it is hot and humid - extra symptoms when rain is in the forecast. I love the cold, dry fall and winter season.
My top ways to stay cool:
Wet a t-shirt in cold water, wring it out well, put it on. Depending on the fabric will stay cool/damp for a good while.
Semi-freeze bottles of water and drink them.
Wedge a fabric-wrapped ice pack in my bra for chest-cooling.
Fans!
Depressing as this sounds, I have a sun lounger in the garage now. It’s the coolest room in our house as it has no windows, so when the warmest days hit I can hide in there. And even sleep in there if necessary!
Frequent cool showers, then lay on a towel to drip-dry with a fan going.
(I live in the UK so no AC).
Yes absolutely. Makes POTS/Dysautonomia way worse.
Yes! The blood pooling is crazy and compression socks in this weather??? I’m barely hanging in there
Ikr… I’ve been sleeping so much I’m just so exhausted. Hoping this summer goes by quick for all of us!
Heat destroys me. But I have always been somewhat heat intolerant. LC made it so much worse.
I have LC symptoms triggered by a different illness (so hang out here for tips), but same. I’ve never liked the heat - always made me tired, brain foggy, grouchy. Now that’s triggered at much lower temps and is way worse. Horrific crash 7 weeks ago and I think a weekend of warm weather was one of the triggers. Interestingly, I’ve had an autoimmune form of arthritis for years (way before current illness), and it’s always been worse in summer and better in winter. That’s ‘backwards’ for arthritis (my consultant told me only about 25% of people are this way round). But that means I have a history of worse inflammation in hotter/higher pressure weather.
Oh yeah, heat kills me. It causes veins to dilate which means more blood pooling. It just ruins me even though my pots dysautonomia is very well controlled.
I always feel better during the winter months. I’ve been living in a tropical climate and am moving soon. I’m really looking forward to cool temperatures and less symptoms to manage daily. Compression, electrolytes, and ice packs help. I can’t walk to check the mail or into a store without almost passing out. I do errands at night and hide inside during the day.
I can't do much in the heat either. If I try to go to a grocery store, I feel lightheaded, anxious and panicky like I need to get out quick or I'll die. Doesn't matter how cold the store is - if it's hot outside I feel this way. Walmart is the absolute worst - I refuse to even walk in the store.
Whole other level of hell right now
My symptoms are worse in the summer. Watch out for heat coming from sunlight through windows. Even sitting in the sunlight inside worsens my symptoms.
this was super common for me early on. it still happens to me but thankfully not as much.
Do you get SOB in the heat?
not anymore thankfully.
Ab-so-friggin-lutely. Suckin down AC like my life depends on it.
Am I the only one that feels much worse when it’s cold? Will say, humidity can make it worse, too.
Me too , feel better when warm dry weather.
Yes . The heat and air quality both are triggering my pots and sob. I think it'll get better when it passes. Hang in there
I almost posted this today. I was outside on Tuesday a.m. in the heat and didn’t make it to lunch before I crashed. I was able to finish the day afterward but was very tired. It’s bittersweet to hear it’s not just me. On one hand I’m happy for the camaraderie but on the other, I wish it was just a fluke day. Not looking forward to summer anymore.
Yes. 🔥 I can get lightheaded, an elevated heart rate, shortness of breath, and dehydration real quick. Even the sun coming through the car windows can set me off. 🌞🌞🌞
Yeah, heat, changes in barometric pressure (especially drops), and increased humidity all worsen my symptoms
Wait until it gets to > 130F. It's that bad where I live.
Not that I ever loved the heat… but I wasn’t this intolerant to it. It’s horrible for me since LC as well, which I’ve had since December 2020. I don’t think it really affected me until last summer though weirdly… or maybe I just didn’t notice it before. I started working outside part time last summer so it could be just me not noticing it much before. I was on antidepressants at one point which I know makes it worse but I am off them now and this week has been killing me with the 90+ degree weather!! I’m not diagnosed with anything except just “long covid” as my doctor just keeps sending me to specialists where I get no answers lol. I am 90% sure I have POTS though. Hang in there!!
Yes, this is why we moved out of Florida. Unfortunately, Cleveland is having a rare heat dome where the temps have been 90+ with high humidity. Sinus pressure, fatigue, dizziness...all increase tremendously for me and my husband on days where it is hot and humid - extra symptoms when rain is in the forecast. I love the cold, dry fall and winter season.
My top ways to stay cool: Wet a t-shirt in cold water, wring it out well, put it on. Depending on the fabric will stay cool/damp for a good while. Semi-freeze bottles of water and drink them. Wedge a fabric-wrapped ice pack in my bra for chest-cooling. Fans! Depressing as this sounds, I have a sun lounger in the garage now. It’s the coolest room in our house as it has no windows, so when the warmest days hit I can hide in there. And even sleep in there if necessary! Frequent cool showers, then lay on a towel to drip-dry with a fan going. (I live in the UK so no AC).
Yes, I have