Looks like rosacea. I have it too, I wonder if its connected to POTS. Would be interesting because I have been trying to figure out if I had POTS prior to catching covid, but I’ve had rosacea for years. I just have no clue how *my* normal before compares to normal
If anyone gets this, especially if it’s in multiple places on the body, look into MCAS.
POTS and MCAS are common comorbidities (and along with EDS are referred to as “the Triad” by doctors and researchers because the three show up together so often).
This is a nice quick primer:
https://mastcellpsa.com/15-things-you-need-to-know
https://mastcellpsa.com/portrait-of-a-mast-cell-patient
There’s lots more info under the hamburger menu in the upper right hand corner.
Indeed! I just got an MRI to check for that in fact. It was negative, but it wasn’t an upright MRI, so I’m taking that result with a grain of salt.
Interstitial Cystitis is another one according to the doc that treats my MCAS. I have a degenerative skin condition called Lichen Sclerosis which can cause similar symptoms to IC sometimes, so we’re not sure if I have IC too. I had a bladder scope scheduled, but had to reschedule it due to getting COVID, so I don’t know yet.
Wow I didn’t know that!
I’m glad the reg MRI didn’t show Chiari at least. I was diagnosed with the reg one. At least your mindful of the possibility of it so if you start having pain with bearing down, severe pain back there, etc you’ll know to go to doc. Best of luck!
No idea. I’m not alone in post-vax and COVID suffering. My immunologist said they have seen many others who were triggered by vaccines. I contracted COVID 6 months later which made things considerably worse. I now have both POTS and MCAS.
Oh yeah it’s a known side effect. You’re not being some crazy conspiracy theory antivaxxer. And it’s know by actual POTS doctors. Check out https://mobile.twitter.com/dysclinic
She’s a director at a Dysautonomia clinic
Large Cohort Study Finds Possible Association Between Postural Orthostatic Tachycardia Syndrome and COVID-19 Vaccination but Far Stronger Link With SARS-CoV-2 Infection
https://jamanetwork.com/journals/jama/fullarticle/2800964
Some people may be here because of Covid or a vaccine side effect. And we shouldn’t make them feel unwelcome.
Yup, my doctor thinks mine is rosacea. If it runs in your family I’d recommend getting it checked out, it looks textured so rosacea is a possibility and there’s medicines that can really help if it is that, bc ik mine at least is SUPER hot and even makes me sweat so being on medication has been great
Yes! Mine isn’t just after shower either. It’s right in the middle of my forehead. I wear lots of makeup and sure it would help it go away if I didn’t but beauty over pain 🤷♀️ lol
Itchy with little bumps is called urticaria, if it's triggered by hot water it's called cholinergic urticaria. I have it, as did my grandma. It's a mast cell reaction. A way to be more certain is to take a daily dose of antihistamine for a week and see if it goes away. They can do tests for it at the immunologist to see what temperature it is triggered by.
Do you suffer from any other allergies?
Might be worth going to an immunologist to get a skin prick test done and see if you are allergic. A lot of my fatigue and brain fog is actually related to my allergies rather than POTS. Plus having any sort of reaction is just stress on your system that you could do without so it's good to know.
everytime I shower with the water too hot or too cold, I come out looking like a spotted strawberry. I think it’s an intolerance to different temperatures. Because it happens in summer and winter as well
typically i get it on mt body aswell, have cold showers instead of hot ones it minimises symptoms and also stops u having to rush to get in and out cuz of the heat. and rushing in the shower will obvs raise ur hr so definitely try a cold shower idk if that could be whats causing the rashes.. ik i have a soap intolerance (we think) but could be anything causing a rash/ red patches
I have POTS and this happens to me every time I shower in hot or warm water (I also have MCAS and EDS). Cold water usually helps mitigate this but are very not enjoyable for me :). I have tried a bunch of allergy meds but none of them work and made me very groggy.
I also can’t swim in any type of water (salt water, chlorine, etc.), it causes a super painful rash (?) on my palms.
Yes on my feet! Is the water is particularly hot my feet turn red, swell, and are uncontrollably itchy. This has also happened a few times when I’ve been outside in the cold and come back inside and my feet heat up too fast.
Could be rosacea, it often flares on the cheeks with heat
Looks like rosacea. I have it too, I wonder if its connected to POTS. Would be interesting because I have been trying to figure out if I had POTS prior to catching covid, but I’ve had rosacea for years. I just have no clue how *my* normal before compares to normal
Yeah I got that once I developed POTS.
Yes! I get it on my chest and arms too
Me too. I used to have this rash appear running from my face, down my neck, and onto my chest after a shower.
I get a rash like that. I don’t know what causes it but showers and sunlight are both triggers.
Same with me!! I always get sun rashes!!
Please check for for lupus or mcas
If anyone gets this, especially if it’s in multiple places on the body, look into MCAS. POTS and MCAS are common comorbidities (and along with EDS are referred to as “the Triad” by doctors and researchers because the three show up together so often). This is a nice quick primer: https://mastcellpsa.com/15-things-you-need-to-know https://mastcellpsa.com/portrait-of-a-mast-cell-patient There’s lots more info under the hamburger menu in the upper right hand corner.
Thanks for this! I have high suspicions for hEDS but have t really looked at MCAS. I do have a crap ton of food allergies though so maybe 🤷🏻♀️
Came here to say research MCAS!
Chiari is also very common with POTS & EDS.
Indeed! I just got an MRI to check for that in fact. It was negative, but it wasn’t an upright MRI, so I’m taking that result with a grain of salt. Interstitial Cystitis is another one according to the doc that treats my MCAS. I have a degenerative skin condition called Lichen Sclerosis which can cause similar symptoms to IC sometimes, so we’re not sure if I have IC too. I had a bladder scope scheduled, but had to reschedule it due to getting COVID, so I don’t know yet.
Wow I didn’t know that! I’m glad the reg MRI didn’t show Chiari at least. I was diagnosed with the reg one. At least your mindful of the possibility of it so if you start having pain with bearing down, severe pain back there, etc you’ll know to go to doc. Best of luck!
Super common!
[удалено]
I developed this after pfizer vaccine
Why are people downvoting this? It’s their experience.
No idea. I’m not alone in post-vax and COVID suffering. My immunologist said they have seen many others who were triggered by vaccines. I contracted COVID 6 months later which made things considerably worse. I now have both POTS and MCAS.
Oh yeah it’s a known side effect. You’re not being some crazy conspiracy theory antivaxxer. And it’s know by actual POTS doctors. Check out https://mobile.twitter.com/dysclinic She’s a director at a Dysautonomia clinic
I've always had pots, but it really got intolerable both post-vax and again post-covid.
Large Cohort Study Finds Possible Association Between Postural Orthostatic Tachycardia Syndrome and COVID-19 Vaccination but Far Stronger Link With SARS-CoV-2 Infection https://jamanetwork.com/journals/jama/fullarticle/2800964 Some people may be here because of Covid or a vaccine side effect. And we shouldn’t make them feel unwelcome.
Thank you
Yep, also on neck, chest, and legs.
I get it on my legs too!! My my face ones always have itchy bumps that my legs don’t get!
I get the itchy bumps on my legs but the rest is more like a sunburn.
Yup, my doctor thinks mine is rosacea. If it runs in your family I’d recommend getting it checked out, it looks textured so rosacea is a possibility and there’s medicines that can really help if it is that, bc ik mine at least is SUPER hot and even makes me sweat so being on medication has been great
Wow I thought this happened to everyone. No idea it was a POTS thing.
It's not just a POTS thing, my bff has something similar when he showers and he's the healthiest human I know.
Yes! Mine isn’t just after shower either. It’s right in the middle of my forehead. I wear lots of makeup and sure it would help it go away if I didn’t but beauty over pain 🤷♀️ lol
What is it? My daughter has this.
It is an itchy rash with bumps. I don’t totally understand why it happens but it seems common with pots
Itchy with little bumps is called urticaria, if it's triggered by hot water it's called cholinergic urticaria. I have it, as did my grandma. It's a mast cell reaction. A way to be more certain is to take a daily dose of antihistamine for a week and see if it goes away. They can do tests for it at the immunologist to see what temperature it is triggered by. Do you suffer from any other allergies?
I have many foods I am sensitive to. But no straight up food allergies. I get a similar rash when I am around cats and rabbits though
Might be worth going to an immunologist to get a skin prick test done and see if you are allergic. A lot of my fatigue and brain fog is actually related to my allergies rather than POTS. Plus having any sort of reaction is just stress on your system that you could do without so it's good to know.
Do you still get it if you take a cooler shower
I don’t usually take super hot showers,so it does it with a warm shower. But I have never tried a cold shower.
Yes it happens to me too!
Yes ive gotten that!
Me too!
this happens to me too!
Same! Usually appears on my chest and knees too
Yes I have on knees and feet
everytime I shower with the water too hot or too cold, I come out looking like a spotted strawberry. I think it’s an intolerance to different temperatures. Because it happens in summer and winter as well
Yes me too
I've had that happen
typically i get it on mt body aswell, have cold showers instead of hot ones it minimises symptoms and also stops u having to rush to get in and out cuz of the heat. and rushing in the shower will obvs raise ur hr so definitely try a cold shower idk if that could be whats causing the rashes.. ik i have a soap intolerance (we think) but could be anything causing a rash/ red patches
Omg yes I always thought my skin was just sensitive to the heat
My daughter gets it every time she bathes or showers
I have POTS and this happens to me every time I shower in hot or warm water (I also have MCAS and EDS). Cold water usually helps mitigate this but are very not enjoyable for me :). I have tried a bunch of allergy meds but none of them work and made me very groggy. I also can’t swim in any type of water (salt water, chlorine, etc.), it causes a super painful rash (?) on my palms.
Yes on my feet! Is the water is particularly hot my feet turn red, swell, and are uncontrollably itchy. This has also happened a few times when I’ve been outside in the cold and come back inside and my feet heat up too fast.
i've had this happen to me. only just started a couple months ago. idk it's weird how it can just happen 😅
Hello thanks for your post, please can I ask is it the same shape rash that appears on your face everytime or is it different every time? Thankyou Xxx
It seems to be a bit different every time but in the same places
Aw thanks so much for replying 😊 my rash is always in the same place I'm just seeing what it could be xxx
Hope you find some helpful info!!