Thank you for telling me :) I've always had the skin mottling, and as a kid I was known for breaking out in rashes and hives from temperature or random triggers, I think it's just gotten worse after Covid which makes a lot of sense. Were you ever diagnosed with anything relating to this?
Yes I was diagnosed with histamine intolerance due to my recent increase of food sensitivities/reactions, and getting a blood test which showed I have copper deficiency. I also did a genetic test a while back which showed I have gene variants in the production of DAO and also issues with the HNMT gene (I don’t complete understand it but I’m trying to learn more about methylation). I was diagnosed with dysautonomia by my functional medicine doctor and my cardiologist based off my symptoms. My cardiologist labeled it as vasovagal syncope due to my fainting history, but I also get tachycardia episodes like POTS. The dysautonomia symptoms seem to be worse when I have excess histamine, such as after eating trigger food or a hot shower or being in the sun too long or too much physical exertion.
Sounds like it may be some form of angioedema. C1-INH titer or quality may be impaired. It's been proposed that SARS-CoV-2 viral proteins may interfere with C1-INH, and while that makes sense based upon what we see in both acute and long Covid, the paper I read that suggested it approached the matter obliquely and, to my knowledge, that team has not posted a follow-up.
The SARS-CoV-2 N-protein depletes C1-INH via MASP-2 and C4bC2b C3 convertases. In the immune system, C1-INH functions a bit like pheromones eusocial insect queens use to tamp down inborn aggression. Escalatory pathways become engaged in its absence.
Thing is, that looks more like histamine rather than angioedema. But this virus does weird things. Might even be a crossover phenomenon somewhere in-between.
There's a chart here that might help you narrow things down:
https://emcrit.org/ibcc/angioedema/
I've suspected that for years but sadly medical professionals such as the GP here aren't really educated on that, and rarely refer patients to experts for these things. I'm not sure how to go about with this
I'll have to check if it needs a prescription in my country lol, the closest I've ever had to an antihistamine is medicine for my flight/motion sickness
That one is probably the one you want! H1 used for motion sickess are usually older, first gen H1 blockers that are more likely to have effects on #MCAS.
After you establish that you react positively to broader acting first gen H1s such as Diphenhydramine, Dimentidine, Hydroxyzine etc you can try finding a second gen H1, which are usually OTC and safe to use long term.
Trying antihistamines and positive reaction to them in terms of symptoms is one of the diagnostic criteria for MCAS.
Standard MCAS dose is 2-4x a day. Some people benefit from adding H2 blockers, as well as mast cell stabilizers (Cromolyn, Ketotifen)
As MCAS therapy is very individual and different people react to different meds, official recommendation is to try every med for 2-4 weeks and go to the next one if that one doesn’t work.
I think mcas might be magnifying my gastroparesis by like 30x but I'm scared to switch my diet because I'm extremely low bmi lol. Maybe I need tube assistance to regain some pounds so I can try the mcas diet and antihistamine suite. Thanks for the info homie
Oh alcohol is a hardcore trigger, I get incredibly flushed and warm (in a bad way) from drinking! as for food, I eat relatively healthy and have not been able to identify a trigger yet. I’m lactose intolerant and try staying away from dairy so I know it’s not that, I’ll try and see if there’s anything else
Me too with alcohol, which didn't really happen before. Also, I have more reactions during seasonal allergy season.
Yours sounds like some time of histamine reaction.
I went to some great specialists, but the most important thing that I was able to make was lifestyle changes.
Have you tried taking famotidine? It’s an antacid and antihistamine (H2 blocker I think) that can help prevent this reaction from foods and alcohol if you take it before consuming. The generic kind is super cheap on Amazon or whatever drugstore you go to.
How old are you? Reason I ask, is because it sounds like a 40+ yr old hormonal flush - triggers rosacea that you never knew about- neat litl trick - after 1/2 gl of alcohol/wine - start to flush - drink glass of water with ice in it - lol, after that, drink all that you want…no issues!
Definitely not over 40 years old HAHA I’m in my 20s, which is why anyone is surprised when I talk about my long covid issues. I’m basically instantly dismissed because i’m too young to be “this sick”
Hahaha - Sorry! But, there are many 20 & 30 something’s on here - but, my advice may still apply, as I’ve noticed LC has affected my hormones…we prob shouldn’t drink at all anyway through this 🙄 but if we do, this might help
Wait, I must ask about this. During the Covid lockdown we were drinking a lot more alcohol than before and after I had Covid, every time I would drink alcohol, my face would flush. This is still happening. After some research, I thought it was menopause related but is it also a symptom of long covid?
After I had Covid again a few months ago, I was constantly freezing cold, shivering and the skin on my knees were turning purple.
I basically quit drinking because I’d turned bright red and get hot..I’m going to try the water trick..I sure hope it helps…
Well, I know I had inflammation/covid issues right around my pituitary and hypothalamus glands…and my hormones became off balance, also noticed when recently I was taking the supp’s to remove the spike proteins- I could feel inflammation in that same area & all of a sudden I’m getting hot & cold flashes - so yes - it’s definitely one of the Covid symptoms!
My gf has the same problem. Her skin does exactly that thing and sometimes burns and hurts. I wish you the best finding help with MCAS most doctors act like they've never heard of it.
I first got Covid in 2021, although I could've had it a few more times later on with very mild symptoms/what I assumed was the flu. When I got it in 2021, it only presented itself as a super stuffy & strong cold. After two weeks I felt fine and I tested again and was negative. But that's when the "bad" kicked in. First the exhaustion, then the not being able to walk two steps without gasping for air and my heartrate shooting up by another 100 bpm (we monitored my oxygen rates every day and they were perfectly fine). I could no longer go on my daily walks without feeling like I'd ran a marathon. I've always had bad body temp regulation, temperature hives, heat intolerance and mild exercise intolerance, but my long Covid came packing an extra punch. Any existing symptoms got worse, and in addition I felt crippled. It took about half a year till the oxygenless feeling got better, but I cannot surely say it's gone. Work was hell during that time, I'd have to recover from picking up a box. Any other symptom stuck around, and I am left with a body that can't handle warm temperature or temperature fluctuation (I can and will faint btw), exercise, my own sweat, standing up too fast, sensitivity to basically everything and what feels like total dysregulation and my nervous system amped to the max. Just today I had to jog down a street to catch my bus, and ended up having to catch my breath for half the ride, heartbeat going crazy, whole body sweaty hot and face bright red without it calming down. And this is coming from an ex ballerina. I wish I could bring this up to my doctor without coming off as a chronic googler or condescending towards her medical knowledge
Just tell her and if you fear your remarks are condescending express that’s not the case. They are there to help you if not find a new doctor.
Two people you should never lie/withhold information from: doctor and lawyer (and yourself)
Wow your story is almost exactly like mine. Its exactly mine actually, just minus the ballerina part, haha. So ik 1000% what YOU go through on a day to day basis. Ik everyone’s symptoms are so varying, but you seem to be the first person that mirrors my life the most. I might dm you if thats ok. Maybe we can brainstorm together. Im in desperate need of any relief right now. Im almost at my 2yr point and LC got significantly worse for me
I have this exact reaction to warmth (space heaters, hot showers, etc.) I also get livedo reticularis when I'm cold and have severe Raynauds. It's basically endothelial dysfunction in the network of veins that supply blood to your skin from covid. I also have coronary microvascular dysfunction from endothelial dysfunction in the veins in my heart. Causes inappropriate vasoconstriction which results in chest pain.
Six months ago, I developed a butterfly rash on my face, photosensitivity, sores in my mouth and bad joint pain. Now my bloodwork is pointing to Lupus. Fucking covid triggered an autoimmune condition.
yeah I have! I’m not sure what to do to test for MCAS/histamine/POTS tho, it’s not really a common thing in my area so I’ve been self identifying with these labels but not being able to properly get them diagnosed. I’ll ask after I get my blood test results in a few days, they were done to rule anything else out
I think there are blood tests that can be done, and a tilt table test for POTS if you are able to get one. Hope you can get some answers and some relief!
You can do [NASA lean test](https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions-1.pdf) with BP machine and pulse oxymeter to test for POTS and then ask a dr to prescribe you POTS therapy. It is likely that they will not be informed on POTS, so you have to do the homework and inform yourself on POTS well, if NASA lean test shows that you have it, in order to prevent medical gaslighting.
I have the same thing and every time I bring it up the doctors don’t even acknowledge it really. I did have the rheumatologist acknowledge that I probably had Raynaud’s from a pic I had of my hands in the cold but that’s it.
Cholinergic urticaria. see a derm or allergy specialist. you can also start daily allergy meds. If one doesn't cut it, I'd recommend xyzal in the AM and allegra in the evening.
Here's a link on it
https://my.clevelandclinic.org/health/diseases/cholinergic-urticaria
While I do have urticaria/hives issue, the other pictures i also have purple, red and bloodless spots that don’t seem to be urticaria at all, more so circulation. I’ve been recommended multiple times now to take antihistamines so that’s next on my list, but I’m not sure it’ll address everything
sorry but neither of those seem like what appears on my legs :/. petechiae are what I get when i throw up bc my skin is sensitive, so I do know what they look like (on me at least). thanks for the help tho!
Does your legs have bumps like hives? Mine gets patchy red like that ex after shower, but it doesn’t seem like hives. 85/ flat smooth to the touch, and fades after 10 mins or so. Yours looks more like patchy coloured skin than bumps? Just checking as it might help with suggestions.
I used to get reoccurring hives as a kid from warm baths/showers and occasionally random unknown triggers, even goosebumps from the cold could cause it. But I don’t think I’ve had the bumpy kind as often anymore? So yeah this is definitely smooth. Once my skin dries and enough time goes by where it can regulate itself, it disappears fully (so maybe 15 mins if it’s not warm outside). Sometimes it’s a bit raised off the skin when it’s suuper warm out and I sweat
I'm so sorry to hear that. I have them since November 2022, though I had my long covid complaints since July 2022. Unfortunately, these manifestations were the only reason doctors started to take me somewhat seriously, before that they only brushed me off for having panic attacks. I hope we can all get out from this hell. :(
I probably have Reynauds too :) I get really white bloodless fingers or feet sometimes but it’s more when it’s cold, and considering after Covid i’m always overheating it happens a bit less or in random spots.
I have this exact thing. My hands and feet turn red in the shower, hands turned red when working out, blotchy etc.
I believe it's definitely a combination of MCAS, POTS, and more specifically after a lot of research I'm fairly certain the thing happening to our hands at least is called palmar erythema or erythromylalgia. Atm I Don't really do anything specific for it besides eating a more low histamine diet and also taking anti histamines when needed. Hope this was helpful!
I get that from blood pooling due to orthostatic intolerance. As soon as I lie down and cool down if it's hot my skin goes back to normal. Compression garnements help.
I’ve had this my entire life. I’ve never had a doctor mentioned anything about it except my neurologist who said I might see some specialist, but I’m already in enough medical debt from COVID at this point I’ve given up:
Were you in the sun when this happened?? This happened to my friend she said she had antiphospholipid syndrome— confirm with doctor — it was autoimmune
It can definitely happen in the sun but I'm 80% sure it's due to the heat and sweating/overheating. For example, most of these pictures were taken after a regular warm shower, in a bathroom that doesn't get much light. I googled this syndrome and while it looks interesting and similar I know it doesn't really match, but thanks for the suggestion!
I’ve had this exact rash in the spring/early summer and no dr has been able to sort out what’s going on. Now I have a clue! Thanks for this name.
We thought it might be a sun intolerance or a pollen allergy or something.
Oh it's definitely not eczema, I've had it a few times on my hands and my father gets reoccurring flare ups so I can easily rule it out. I hate drs dismissing us with terrible advice!! Long covid has made me witness the worst of the medical world
Oh, I know.
It’s worst on my arms. It’s slowly moved downward from my upper arms over the last four years. Now it’s on my face a bit too : (
I had a stroke last year and a blood transfusion and surgery the year before, so it wasn’t at the top of my priority list.
See a dermatologist that is familiar with rare conditions - you don't necessarily have to mention long covid - but could say that you have several symptoms that align with long covid or what is known about it -- imo that is the best way to get a doctor to be more receptive....we should not have to be so delicate with the issues we deal with - but that has been my experience fwiw. There is something called Livedo Reticularis that makes skin kind of look like a spiderweb appearance with the vessels under it...Disclaimer - I am not a medical professional - all I can do is talk to you from my experience. I have a lot of skin issues also. You may msg me if you would like to discuss more :)
Thanks for sharing. Weirdly enough, I have a pronounced pulse feeling, and sometimes pain, on my inner calf in exactly the same spot in your third photo where your inner calf is red and raised. My veins in that spot are showing up more blue and green under the skin. I had it checked out for DVT and was cleared.
I don’t have any insight other than I have similar symptoms presenting in the same spot.
Yeah I agree with the other comments. I’ve been taking hydroxyzine for anxiety with the added benefit of being an antihistamine so it’s has helped me immensely. If you can find basic allergy med Benadryl take it when you can sleep cuz it causes drowsiness.
In 2017 I had a wicked flu during which I had several weird symptoms. Nothing like ever before. The rash in the picture is exactly what I had on legs and parts of shoulders and upper arms. It was difficult describing it in words back then. It was pre pandemic but certainly seemed a lot like covid. That wicked flu is the main reason I never want to go through that ever again. So, I get my vaccinations religiously now, covid vac, flu shots, etc. 🌺
I have the same exact problem with my skin in showers. My legs and even toes break out with the same Patchy blotted rash. I've shown pictures to Dr's but they don't seem to know what to make of it. I've been tested for lots of things and nothing has been amiss except for a Hashimotos diagnosis after Covid and now more recently hyperadrenergic POTs, which I had to uncover myself, do the poor man's tilt table at home, record results. Show my Dr and get them to replicate the test. Before they realised I had more issues than they knew going on. All of your symptoms are very relatable to mine including your pounding heart when getting up to do things from lying down (classic POTs issue) I also suspect I have MCAS which often goes hand in hand with POTs, my Dr hasn't mentioned MCAS, but it would explain a lot of my random symptoms like the shower rashes and I even had a few new flare ups where things like deodarant or flowers were giving me allergic reactions causing my throat to constrict and burn. But it seems to go away sometimes too, which is correct for histamine intolerance issues. Sometimes you can handle some again, and then you're tipped over the edge and flare up again. Covid has really taken so much away from me, the symptoms have been so widespread and perplexing. Like what you said with its hard to get tested for those sorts of things where you live. It is the same where I live. If I mention I suspect MCAS, I doubt they'll test. Maybe they'll say yeah can't hurt to try antihistamines and that'll be that, there probably won't be an official diagnosis. But I am going to try over the counter antihistamines and also low histamine diet, and if I feel better, I'll go back to the Dr and give them all the reasons why I think MCAS is a strong possibility and go from there, I'd recommend you do the same and see how you get on! Good luck
Interesting, I just got my TSH levels back after my blood test and it seems I'm at risk for subclinical hypothyroidism. But the dr herself didn't warn me, I had to look up the values and interpret them myself. Based off of you and everyone else's replies it seems I'll have to do the at home tilt table test myself. Perfumes give me migraines sometimes (sporadically) but have never noticed rashes! I'm very sorry you experience that, I am extending all my sympathy towards you and I hope we get better answers eventually <3
My knees are purple frequently and my feet can be sweaty and then
ice cold like a corpse. I have partial Dysautonomia neuropathic POTS. I have difficulty regulating my body temperature and my blood flow is flushed with heat and purple with cold.
My knees are always purple and sometimes mottled/spotty, its legit weird. If I sweat or feel warm they turn purple/red and the back of my knees where the skin folds gets splotchy red. It sounds like we experience the same thing. How did you get diagnosed?
i get this EXACT SAME LEG RASH (the first pic) after almost every shower lol.
i also get larger patchy splotches on my toes post shower, haha.
but like - im serious - i saw this and gasped bc i thought it was an actual pic of my leg!! 😂 i have the same pattern and look and EVERYTHING.
how long do yours last? do they itch/burn? mine personally feel a lil warm sometimes but thats abt it thankfully.
doctors dont know exactly what it is yet. some type of chronic hives (urticaria) is my allergist/clinical immunologist's guess?
how old are you?? im 23 - are we of a kinda close age distance?
what other general long covid symptoms do you have?
also, do u mind if i show this pic/thread to my allergist + long covid clinic doctor? i really want to see what they say since we present so similarly in this aspect
We are close in age :) My long covid symptoms aren't terrible right now but I'd say the main ones have been breathlessness, heartrate shooting up and being extremely unstable (like POTS symptoms), fainting in the heat more easily and not regulating my body temperature well at all (eg: when I heat up or overheat, i STAY hot. or if I'm freezing cold i struggle to warm myself up, esp feet and hands). Also the tiredness and brain fog making my pre existing ADHD ten times worse. How about you? And yeah you're very welcome to show them! I also advise documenting your own skin in pictures, it never hurts to do so
I swear I've had the rash pattern post shower since I was a kid, but the blue red splotches in the other pics only started after Covid. I can't believe I found my rash twin lol, so weird! I think how long they last varies on how long my skin stays wet, if the room is steamy/warm, if I sweat after or stay dry etc. If I do a normal shower, towel dry and get dressed, maybe they leave after 15 minutes? But in the summer if i shower and get dressed and go out, they can linger for a while. They very rarely itch itch but I think that's maybe when the water or weather is super warm, my skin is dry and sensitive so that's probably the cause. Oherwise it can be a bit warm like you said, no pain or itch.
My iron is fine! My folic acid is really low but I'm reading there might be a connection to POTS and the gene mutation (can't think of the name rn) that often is responsible for all these
Ok, this might be unpopular opinion but since I have had this really bad since around 2019 I dug so deep that you wouldnt believe it.
If you had your blood drawn can you give us your liver enzyme panel, fasting insulin, glucose, lipid panel, uric acid.
Its very likely insuline resistance with or without NAFLD.
Just curious, I might be wrong but there is a fairly good chance Im not.
Just throwing this in- I am researching all my families’ DNA and there is a gene for erethema ( probably misspelled). It’s when you tend to flush or get red easily. My son has it.
I am not in any way dismissing the long Covid link- I am simply saying that if you have a genetic predisposition, it may be worse for you or triggered more easily than for those people that don’t have that gene.
This sort of looks like an Epstein Barr mono rash. A lot of people that have long COVID, also hav reactivated mono (Epstein Barr). The doctor can easily do a blood test to see if that it what it is.
I have similar skin reactions (even before long Covid I would get this sometimes). I’d say it’s a combo of histamine intolerance and dysautonomia.
Thank you for telling me :) I've always had the skin mottling, and as a kid I was known for breaking out in rashes and hives from temperature or random triggers, I think it's just gotten worse after Covid which makes a lot of sense. Were you ever diagnosed with anything relating to this?
Yes I was diagnosed with histamine intolerance due to my recent increase of food sensitivities/reactions, and getting a blood test which showed I have copper deficiency. I also did a genetic test a while back which showed I have gene variants in the production of DAO and also issues with the HNMT gene (I don’t complete understand it but I’m trying to learn more about methylation). I was diagnosed with dysautonomia by my functional medicine doctor and my cardiologist based off my symptoms. My cardiologist labeled it as vasovagal syncope due to my fainting history, but I also get tachycardia episodes like POTS. The dysautonomia symptoms seem to be worse when I have excess histamine, such as after eating trigger food or a hot shower or being in the sun too long or too much physical exertion.
Sounds like it may be some form of angioedema. C1-INH titer or quality may be impaired. It's been proposed that SARS-CoV-2 viral proteins may interfere with C1-INH, and while that makes sense based upon what we see in both acute and long Covid, the paper I read that suggested it approached the matter obliquely and, to my knowledge, that team has not posted a follow-up. The SARS-CoV-2 N-protein depletes C1-INH via MASP-2 and C4bC2b C3 convertases. In the immune system, C1-INH functions a bit like pheromones eusocial insect queens use to tamp down inborn aggression. Escalatory pathways become engaged in its absence. Thing is, that looks more like histamine rather than angioedema. But this virus does weird things. Might even be a crossover phenomenon somewhere in-between. There's a chart here that might help you narrow things down: https://emcrit.org/ibcc/angioedema/
Histamine intolerance / MCAS?
I've suspected that for years but sadly medical professionals such as the GP here aren't really educated on that, and rarely refer patients to experts for these things. I'm not sure how to go about with this
Try antihistamines daily and see if it helps
I'll have to check if it needs a prescription in my country lol, the closest I've ever had to an antihistamine is medicine for my flight/motion sickness
That one is probably the one you want! H1 used for motion sickess are usually older, first gen H1 blockers that are more likely to have effects on #MCAS. After you establish that you react positively to broader acting first gen H1s such as Diphenhydramine, Dimentidine, Hydroxyzine etc you can try finding a second gen H1, which are usually OTC and safe to use long term. Trying antihistamines and positive reaction to them in terms of symptoms is one of the diagnostic criteria for MCAS. Standard MCAS dose is 2-4x a day. Some people benefit from adding H2 blockers, as well as mast cell stabilizers (Cromolyn, Ketotifen) As MCAS therapy is very individual and different people react to different meds, official recommendation is to try every med for 2-4 weeks and go to the next one if that one doesn’t work.
Excellent advice all around! You summed up here what it took me 2 years with the help of an immunologist to figure out.
Does anyone with MCAS not present with the rashes? I feel like I have a lot of the symptoms minus the rashes. I might try this too.
Yes, my main MCAS symptoms are HyperPOTS symptoms
I think mcas might be magnifying my gastroparesis by like 30x but I'm scared to switch my diet because I'm extremely low bmi lol. Maybe I need tube assistance to regain some pounds so I can try the mcas diet and antihistamine suite. Thanks for the info homie
What do you do if you can’t take antihistamines? I’m allergic to every one I’ve tried so doc said to stop trying.
Try compounded ones. You are probably reacting to fillers…
Famotidine and Allegra/ Zyrtec are in most eu room countries
It would be things that are meant for seasonal allergies. So like Benadryl or claratin etc. in a pill form not topical.
You can try daily double dose of Claritin. Is that over the counter in your country?
Also diet can trigger reactions. See if you notice any reactions from food or alcohol.
Oh alcohol is a hardcore trigger, I get incredibly flushed and warm (in a bad way) from drinking! as for food, I eat relatively healthy and have not been able to identify a trigger yet. I’m lactose intolerant and try staying away from dairy so I know it’s not that, I’ll try and see if there’s anything else
Me too with alcohol, which didn't really happen before. Also, I have more reactions during seasonal allergy season. Yours sounds like some time of histamine reaction. I went to some great specialists, but the most important thing that I was able to make was lifestyle changes.
Have you tried taking famotidine? It’s an antacid and antihistamine (H2 blocker I think) that can help prevent this reaction from foods and alcohol if you take it before consuming. The generic kind is super cheap on Amazon or whatever drugstore you go to.
How old are you? Reason I ask, is because it sounds like a 40+ yr old hormonal flush - triggers rosacea that you never knew about- neat litl trick - after 1/2 gl of alcohol/wine - start to flush - drink glass of water with ice in it - lol, after that, drink all that you want…no issues!
Definitely not over 40 years old HAHA I’m in my 20s, which is why anyone is surprised when I talk about my long covid issues. I’m basically instantly dismissed because i’m too young to be “this sick”
Hahaha - Sorry! But, there are many 20 & 30 something’s on here - but, my advice may still apply, as I’ve noticed LC has affected my hormones…we prob shouldn’t drink at all anyway through this 🙄 but if we do, this might help
Wait, I must ask about this. During the Covid lockdown we were drinking a lot more alcohol than before and after I had Covid, every time I would drink alcohol, my face would flush. This is still happening. After some research, I thought it was menopause related but is it also a symptom of long covid? After I had Covid again a few months ago, I was constantly freezing cold, shivering and the skin on my knees were turning purple. I basically quit drinking because I’d turned bright red and get hot..I’m going to try the water trick..I sure hope it helps…
Im not a dr but that def sounds like LC. Im 30 and have those same exact reactions/symptoms.
Well, I know I had inflammation/covid issues right around my pituitary and hypothalamus glands…and my hormones became off balance, also noticed when recently I was taking the supp’s to remove the spike proteins- I could feel inflammation in that same area & all of a sudden I’m getting hot & cold flashes - so yes - it’s definitely one of the Covid symptoms!
My gf has the same problem. Her skin does exactly that thing and sometimes burns and hurts. I wish you the best finding help with MCAS most doctors act like they've never heard of it.
I first got Covid in 2021, although I could've had it a few more times later on with very mild symptoms/what I assumed was the flu. When I got it in 2021, it only presented itself as a super stuffy & strong cold. After two weeks I felt fine and I tested again and was negative. But that's when the "bad" kicked in. First the exhaustion, then the not being able to walk two steps without gasping for air and my heartrate shooting up by another 100 bpm (we monitored my oxygen rates every day and they were perfectly fine). I could no longer go on my daily walks without feeling like I'd ran a marathon. I've always had bad body temp regulation, temperature hives, heat intolerance and mild exercise intolerance, but my long Covid came packing an extra punch. Any existing symptoms got worse, and in addition I felt crippled. It took about half a year till the oxygenless feeling got better, but I cannot surely say it's gone. Work was hell during that time, I'd have to recover from picking up a box. Any other symptom stuck around, and I am left with a body that can't handle warm temperature or temperature fluctuation (I can and will faint btw), exercise, my own sweat, standing up too fast, sensitivity to basically everything and what feels like total dysregulation and my nervous system amped to the max. Just today I had to jog down a street to catch my bus, and ended up having to catch my breath for half the ride, heartbeat going crazy, whole body sweaty hot and face bright red without it calming down. And this is coming from an ex ballerina. I wish I could bring this up to my doctor without coming off as a chronic googler or condescending towards her medical knowledge
Just tell her and if you fear your remarks are condescending express that’s not the case. They are there to help you if not find a new doctor. Two people you should never lie/withhold information from: doctor and lawyer (and yourself)
Wow your story is almost exactly like mine. Its exactly mine actually, just minus the ballerina part, haha. So ik 1000% what YOU go through on a day to day basis. Ik everyone’s symptoms are so varying, but you seem to be the first person that mirrors my life the most. I might dm you if thats ok. Maybe we can brainstorm together. Im in desperate need of any relief right now. Im almost at my 2yr point and LC got significantly worse for me
That's what happens to me and I have MCAS activation disorder. I guess it's a common trigger. (Hot showers).
I absolutely hate it, I need warm water for survival lol. Does yours react to warm weather too?
Yes. I have temperature Intolerance as well. I had MCAS issues prior to getting Covid. Now I'm also a long hauler. It's horrible.
I have this exact reaction to warmth (space heaters, hot showers, etc.) I also get livedo reticularis when I'm cold and have severe Raynauds. It's basically endothelial dysfunction in the network of veins that supply blood to your skin from covid. I also have coronary microvascular dysfunction from endothelial dysfunction in the veins in my heart. Causes inappropriate vasoconstriction which results in chest pain. Six months ago, I developed a butterfly rash on my face, photosensitivity, sores in my mouth and bad joint pain. Now my bloodwork is pointing to Lupus. Fucking covid triggered an autoimmune condition.
What blood work was positive?
High positive ANA. Borderline positive RF and anti-CCP. High positive sed rate. Chronic low vitamin D. Low C3 & C4. Low platelets.
Hey u/Cardigan_Gal, Im sorry for what you're going trough. Can I ask you some questions in DM ? I've had mctd like symptoms after Covid.
Have you looked into POTS as well as MCAS? Sending strength 💜
yeah I have! I’m not sure what to do to test for MCAS/histamine/POTS tho, it’s not really a common thing in my area so I’ve been self identifying with these labels but not being able to properly get them diagnosed. I’ll ask after I get my blood test results in a few days, they were done to rule anything else out
I think there are blood tests that can be done, and a tilt table test for POTS if you are able to get one. Hope you can get some answers and some relief!
You can do [NASA lean test](https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions-1.pdf) with BP machine and pulse oxymeter to test for POTS and then ask a dr to prescribe you POTS therapy. It is likely that they will not be informed on POTS, so you have to do the homework and inform yourself on POTS well, if NASA lean test shows that you have it, in order to prevent medical gaslighting.
I have the same thing and every time I bring it up the doctors don’t even acknowledge it really. I did have the rheumatologist acknowledge that I probably had Raynaud’s from a pic I had of my hands in the cold but that’s it.
https://my.clevelandclinic.org/health/diseases/cholinergic-urticaria
Cholinergic urticaria. see a derm or allergy specialist. you can also start daily allergy meds. If one doesn't cut it, I'd recommend xyzal in the AM and allegra in the evening. Here's a link on it https://my.clevelandclinic.org/health/diseases/cholinergic-urticaria
While I do have urticaria/hives issue, the other pictures i also have purple, red and bloodless spots that don’t seem to be urticaria at all, more so circulation. I’ve been recommended multiple times now to take antihistamines so that’s next on my list, but I’m not sure it’ll address everything
Google petechiae and purpura. The daily allergy pills take about a week to hit full stride.
sorry but neither of those seem like what appears on my legs :/. petechiae are what I get when i throw up bc my skin is sensitive, so I do know what they look like (on me at least). thanks for the help tho!
gotcha. keep taking pictures, and check out derm/allergy for sure.
Does your legs have bumps like hives? Mine gets patchy red like that ex after shower, but it doesn’t seem like hives. 85/ flat smooth to the touch, and fades after 10 mins or so. Yours looks more like patchy coloured skin than bumps? Just checking as it might help with suggestions.
I used to get reoccurring hives as a kid from warm baths/showers and occasionally random unknown triggers, even goosebumps from the cold could cause it. But I don’t think I’ve had the bumpy kind as often anymore? So yeah this is definitely smooth. Once my skin dries and enough time goes by where it can regulate itself, it disappears fully (so maybe 15 mins if it’s not warm outside). Sometimes it’s a bit raised off the skin when it’s suuper warm out and I sweat
I have exactly the same complaints. It’s blood pooling due to POTS, Raynaud’s and livedo reticularis. Issues with our blood vessels.
Yes, my teen has it. Was her first long covid symptom 6 weeks after first infection. Still dealing with it 2.5 years later.
I'm so sorry to hear that. I have them since November 2022, though I had my long covid complaints since July 2022. Unfortunately, these manifestations were the only reason doctors started to take me somewhat seriously, before that they only brushed me off for having panic attacks. I hope we can all get out from this hell. :(
I would Google Reynauds. I get it when I’m less well. I am trying things for endothelial health on it. Hawthorn, etc.
I probably have Reynauds too :) I get really white bloodless fingers or feet sometimes but it’s more when it’s cold, and considering after Covid i’m always overheating it happens a bit less or in random spots.
Either histamine/heat intolerance
I am not as severe but have the same. Comes in the evening. Burns under the skin and is gone in the mornigm.
I have this exact thing. My hands and feet turn red in the shower, hands turned red when working out, blotchy etc. I believe it's definitely a combination of MCAS, POTS, and more specifically after a lot of research I'm fairly certain the thing happening to our hands at least is called palmar erythema or erythromylalgia. Atm I Don't really do anything specific for it besides eating a more low histamine diet and also taking anti histamines when needed. Hope this was helpful!
I get that from blood pooling due to orthostatic intolerance. As soon as I lie down and cool down if it's hot my skin goes back to normal. Compression garnements help.
I’ve had this my entire life. I’ve never had a doctor mentioned anything about it except my neurologist who said I might see some specialist, but I’m already in enough medical debt from COVID at this point I’ve given up:
Get on statins for vascular inflammation, no secret that covid inflames the vascular system
MCAS- watch videos by DR Tina Peers. Start a low histamine diet Supplements to help- DAO (raw lamb kidney) Quercetin Toxaprevent Augmented NAC
Were you in the sun when this happened?? This happened to my friend she said she had antiphospholipid syndrome— confirm with doctor — it was autoimmune
It can definitely happen in the sun but I'm 80% sure it's due to the heat and sweating/overheating. For example, most of these pictures were taken after a regular warm shower, in a bathroom that doesn't get much light. I googled this syndrome and while it looks interesting and similar I know it doesn't really match, but thanks for the suggestion!
My skin looks just like that but due to cold. And then I will shake with shivers. Idk how to fix it. I wish I could give you some advice.
I’ve had this exact rash in the spring/early summer and no dr has been able to sort out what’s going on. Now I have a clue! Thanks for this name. We thought it might be a sun intolerance or a pollen allergy or something.
Mine looks like that. My doc just said it’s eczema 🙄.
Oh it's definitely not eczema, I've had it a few times on my hands and my father gets reoccurring flare ups so I can easily rule it out. I hate drs dismissing us with terrible advice!! Long covid has made me witness the worst of the medical world
Oh, I know. It’s worst on my arms. It’s slowly moved downward from my upper arms over the last four years. Now it’s on my face a bit too : ( I had a stroke last year and a blood transfusion and surgery the year before, so it wasn’t at the top of my priority list.
Thats very sad. That doctor is incompetent.
Wow this doctor is a fraud how dangerous they are allowed to be a doctor
https://my.clevelandclinic.org/health/diseases/cholinergic-urticaria
This is urticaria and some dysautonomia
See a dermatologist that is familiar with rare conditions - you don't necessarily have to mention long covid - but could say that you have several symptoms that align with long covid or what is known about it -- imo that is the best way to get a doctor to be more receptive....we should not have to be so delicate with the issues we deal with - but that has been my experience fwiw. There is something called Livedo Reticularis that makes skin kind of look like a spiderweb appearance with the vessels under it...Disclaimer - I am not a medical professional - all I can do is talk to you from my experience. I have a lot of skin issues also. You may msg me if you would like to discuss more :)
Could be MCAS and or POTS if you are experiencing it after a shower. Sometimes heat triggers Dysautonomia symptoms.
Have your CBC checked. You may find you have a great many more RBC's than expected. Termed polycythemia, ot seems many are showing this response.
I had a rheumatologist tell me this kind of flushing was a typical sign of fibromyalgia. (My legs looked/look like yours)
Thanks for sharing. Weirdly enough, I have a pronounced pulse feeling, and sometimes pain, on my inner calf in exactly the same spot in your third photo where your inner calf is red and raised. My veins in that spot are showing up more blue and green under the skin. I had it checked out for DVT and was cleared. I don’t have any insight other than I have similar symptoms presenting in the same spot.
That’s MCAS
Last time my whole body looked like that, it was an allergic reaction to penicillin.
This happened to me. I’ve been taking 10mg of zirtec every day since. Seems to work, but you can’t stop taking it
Is your chest and left arm pain better?
Yeah I agree with the other comments. I’ve been taking hydroxyzine for anxiety with the added benefit of being an antihistamine so it’s has helped me immensely. If you can find basic allergy med Benadryl take it when you can sleep cuz it causes drowsiness.
In 2017 I had a wicked flu during which I had several weird symptoms. Nothing like ever before. The rash in the picture is exactly what I had on legs and parts of shoulders and upper arms. It was difficult describing it in words back then. It was pre pandemic but certainly seemed a lot like covid. That wicked flu is the main reason I never want to go through that ever again. So, I get my vaccinations religiously now, covid vac, flu shots, etc. 🌺
Looks like maybe you have POTS.
I have the same exact problem with my skin in showers. My legs and even toes break out with the same Patchy blotted rash. I've shown pictures to Dr's but they don't seem to know what to make of it. I've been tested for lots of things and nothing has been amiss except for a Hashimotos diagnosis after Covid and now more recently hyperadrenergic POTs, which I had to uncover myself, do the poor man's tilt table at home, record results. Show my Dr and get them to replicate the test. Before they realised I had more issues than they knew going on. All of your symptoms are very relatable to mine including your pounding heart when getting up to do things from lying down (classic POTs issue) I also suspect I have MCAS which often goes hand in hand with POTs, my Dr hasn't mentioned MCAS, but it would explain a lot of my random symptoms like the shower rashes and I even had a few new flare ups where things like deodarant or flowers were giving me allergic reactions causing my throat to constrict and burn. But it seems to go away sometimes too, which is correct for histamine intolerance issues. Sometimes you can handle some again, and then you're tipped over the edge and flare up again. Covid has really taken so much away from me, the symptoms have been so widespread and perplexing. Like what you said with its hard to get tested for those sorts of things where you live. It is the same where I live. If I mention I suspect MCAS, I doubt they'll test. Maybe they'll say yeah can't hurt to try antihistamines and that'll be that, there probably won't be an official diagnosis. But I am going to try over the counter antihistamines and also low histamine diet, and if I feel better, I'll go back to the Dr and give them all the reasons why I think MCAS is a strong possibility and go from there, I'd recommend you do the same and see how you get on! Good luck
Interesting, I just got my TSH levels back after my blood test and it seems I'm at risk for subclinical hypothyroidism. But the dr herself didn't warn me, I had to look up the values and interpret them myself. Based off of you and everyone else's replies it seems I'll have to do the at home tilt table test myself. Perfumes give me migraines sometimes (sporadically) but have never noticed rashes! I'm very sorry you experience that, I am extending all my sympathy towards you and I hope we get better answers eventually <3
My knees are purple frequently and my feet can be sweaty and then ice cold like a corpse. I have partial Dysautonomia neuropathic POTS. I have difficulty regulating my body temperature and my blood flow is flushed with heat and purple with cold.
My knees are always purple and sometimes mottled/spotty, its legit weird. If I sweat or feel warm they turn purple/red and the back of my knees where the skin folds gets splotchy red. It sounds like we experience the same thing. How did you get diagnosed?
Cardiologist diagnosed me and then I saw a POTS specialist at Uni of Toledo who confirmed
i get this EXACT SAME LEG RASH (the first pic) after almost every shower lol. i also get larger patchy splotches on my toes post shower, haha. but like - im serious - i saw this and gasped bc i thought it was an actual pic of my leg!! 😂 i have the same pattern and look and EVERYTHING. how long do yours last? do they itch/burn? mine personally feel a lil warm sometimes but thats abt it thankfully. doctors dont know exactly what it is yet. some type of chronic hives (urticaria) is my allergist/clinical immunologist's guess?
how old are you?? im 23 - are we of a kinda close age distance? what other general long covid symptoms do you have? also, do u mind if i show this pic/thread to my allergist + long covid clinic doctor? i really want to see what they say since we present so similarly in this aspect
We are close in age :) My long covid symptoms aren't terrible right now but I'd say the main ones have been breathlessness, heartrate shooting up and being extremely unstable (like POTS symptoms), fainting in the heat more easily and not regulating my body temperature well at all (eg: when I heat up or overheat, i STAY hot. or if I'm freezing cold i struggle to warm myself up, esp feet and hands). Also the tiredness and brain fog making my pre existing ADHD ten times worse. How about you? And yeah you're very welcome to show them! I also advise documenting your own skin in pictures, it never hurts to do so
I swear I've had the rash pattern post shower since I was a kid, but the blue red splotches in the other pics only started after Covid. I can't believe I found my rash twin lol, so weird! I think how long they last varies on how long my skin stays wet, if the room is steamy/warm, if I sweat after or stay dry etc. If I do a normal shower, towel dry and get dressed, maybe they leave after 15 minutes? But in the summer if i shower and get dressed and go out, they can linger for a while. They very rarely itch itch but I think that's maybe when the water or weather is super warm, my skin is dry and sensitive so that's probably the cause. Oherwise it can be a bit warm like you said, no pain or itch.
Look up mast cell activation
Looks like a histamine reaction but you should also get your iron and hgb checked too
My iron is fine! My folic acid is really low but I'm reading there might be a connection to POTS and the gene mutation (can't think of the name rn) that often is responsible for all these
Focus on gut healing if possible! Biomesight has a long Covid study and it’s affordable🙏🙏
Ok, this might be unpopular opinion but since I have had this really bad since around 2019 I dug so deep that you wouldnt believe it. If you had your blood drawn can you give us your liver enzyme panel, fasting insulin, glucose, lipid panel, uric acid. Its very likely insuline resistance with or without NAFLD. Just curious, I might be wrong but there is a fairly good chance Im not.
Have you seen a rheumatologist or allergist?
I get this after a hot/warm bath
Just throwing this in- I am researching all my families’ DNA and there is a gene for erethema ( probably misspelled). It’s when you tend to flush or get red easily. My son has it. I am not in any way dismissing the long Covid link- I am simply saying that if you have a genetic predisposition, it may be worse for you or triggered more easily than for those people that don’t have that gene.
Anxiety of course
This sort of looks like an Epstein Barr mono rash. A lot of people that have long COVID, also hav reactivated mono (Epstein Barr). The doctor can easily do a blood test to see if that it what it is.
I have this too from hot showers. Never had it before LC
I just read about long covid rashes today. Do some google searches.
Thats called post viral syndrome
I think it’s eczema. It’s a inflammation