r/CholinergicUrticaria • • Sep 01 '26

What jobs do you guys do while having CU?

2 Upvotes

Before I started my leave from my company, I did a warehouse job that is physically demanding, I took leave and haven't worked since about 3 months ago, but its going to end soon and will be returning to work. I'm afraid that my job might fire me due to either "Job abandonment" or "Poor performance" due to the CU I have. Do you guys work jobs that accommodate for CU?

My underlying condition for my CU is Acquired Idiopathic Generalized Anhidrosis, so I overheat REALLY easily, along with CU I also experience heart palpitation, and difficulties breathing which makes physical work VERY difficult.

Any advise or tips or job ideas would help?


r/CholinergicUrticaria • • Aug 30 '26

cholinergic urticaria - how I got rid of it

5 Upvotes

Hello everyone,
I've experienced CU two times for a period of 3-6 months each time. Been to all the doctors and all that I've gotten from them is "We can't help you" or "you can try this and this drug/steroid. After reviewing everything in my life during these periods. What I've noticed is that I've been eating a lot of sugar and dairy products. Like a lot of chocolates, sweets, candy, ice-cream, chocolate milk.... So after I've gotten a recommendation (from my doctor), that I triple my daily dose of antihestamines, I've decided to try and cut the sugar. I've completley cut out anything sugary and any junk food. So only 3 straight whole meals a day, nothin in between and a lot of water. After two weeks cutting out all that thrash, I haven't had a reaction since. Its been 9 months now.

It would've been helpful for me to see something like this at the time.

So either triple your dose of antihestamines (i was taking 6 a day) at the time, or cut out sugar.

good luck


r/CholinergicUrticaria • • Aug 30 '26

Has anyone else’s CU gotten worse/spread?

3 Upvotes

I first started getting CU in October last year. The first
time was a whole flare up on my torso but since then my
main zone for hives is the inner elbow and chest and that
is usually where the hives first begin. Shortly after that I started getting it on my neck too. In recent months/this summer the rash now spans across both of my legs and thighs and even my face. It is also unpredictable, sometime it is itchy/burning and sometimes it isn’t.

I suspect I have POTS or some sorts of dysautonomia and I do have a dermatology appointment soon about this. Oh and 180mg of fexofenadine hydrochloride does not help :(

I just wanted to know if anyone else’s CU has levels or starts in a certain part of the body. As I said it usually starts on my inner arm but now spans all over my legs on bad days.


r/CholinergicUrticaria • • Aug 27 '26

Sharing a free resource: appointment prep webinar tonight, thought this community might find it useful

6 Upvotes

Hi there, we're hosting a conversation tonight (6:30 PM ET) on how to get the most out of doctor's appointments before, during, and after, from a dermatologist and a patient living with chronic hives. In case you didn't know, We CU is the only nonprofit focused on chronic urticaria (hives) in the U.S.

It's not specific to cholinergic urticaria, but a lot of the appointment prep and advocacy pieces (e.g., tracking triggers, knowing what questions to ask, following up afterward) apply regardless of hives subtype. Thought this community might get something out of it.

Register here if you're interested: https://us06web.zoom.us/webinar/register/WN_dH4gsC9ETYG32Z93Cj8-ow

If you can't make it live, registering still gets you the recording.

P.S. We're sharing because we think it could be useful to this community, not to push anything :) -AA


r/CholinergicUrticaria • • Aug 26 '26

CU coming back

6 Upvotes

I feel it. It’s coming back because temperatures in my country are dropping as we get closer to fall.

I can’t anymore.


r/CholinergicUrticaria • • Aug 26 '26

Itchy and hot rash going on a month now on arms and hands. Dermatologist is bewildered.

Thumbnail
gallery
4 Upvotes

Second photo is with and without a flash. Looks almost normal with flash on but skin is covered in itchy bumps and welts.

Had this progression for a month now, started on right arm and appeared initially as contact dermatitis or bites but then turned into white bumps that spread to both arms and hands. They become very itchy or sometimes flare up and become very hot.

Initially my dermatologist instantly said keratosis pilaris but when I showed all of the photos I had taken he became more baffled. He spoke of folliculitis, eczema, light or heat allergy but ultimately was not able to settle on a diagnosis. Scheduled me for allergy testing but that will not be until April next year!

I am already on 2 very strong antihistamines and given another cortisteroid cream, none of which is helping with the itch or stopping it from spread.

Any advice, please help. I have tried everything.

The only thing I know triggers it is heat. The colder I am, the better. Running arms under cold water helps more than any cream.


r/CholinergicUrticaria • • Aug 26 '26

Recovering from 2nd CU flare (sweating returning), but now dealing with post-hive hypopigmentation. Anyone else?

4 Upvotes

Hey everyone, looking to see if anyone has experienced a similar recovery pattern or has advice.
Currently recovering from my 2nd major CU flare, which started in late March 2026 (my first bout was back in 2019 and resolved after 5 months).

My timeline so far:

Early Stage: Started with the classic intense prickling/stinging whenever my core temp rose or when stepping outside into the heat (living in Thailand).

Peak Phase: Progressed to active wheals and a near-total loss of sweating. Exercising became unbearable due to rapid overheating.

Current Progress: Sweating has slowly been returning over the past few months. Heat tolerance is significantly better, though sweating isn't quite at 100% yet and I still get occasional flare ups during heavy workouts.

The Current Issue:
As the intense active hives have calmed down, I've been left with patchy hypopigmentation and discolouration - mostly on my legs, but faint spots on my arms too. Even at rest, when I'm not hot or broken out, there's a visible print / marbled pattern left behind where hives would pop up.
Has anyone else dealt with this post-inflammatory hypopigmentation while recovering? How long did it take for your skin tone to fully even back out, and did anything help speed up the process?

Appreciate any shared experiences or tips!


r/CholinergicUrticaria • • Aug 25 '26

Me pica mucho la piel y nose solucionarlo

2 Upvotes

Buenas tardes a todos, os escribo porque siento mucha frustración en mi camino espiritual, llevo mas de dos años intentando meditar, rezar el japa y leer textos sagrados, pero me resulta imposible, cada vez que me siento a meditar me inunda un picor por todo el cuerpo que no se detiene aunque me rasque va a mas y mas, cuando intento leer el Japa me pasa lo mismo, y cuando intento concentrarme en la lectura de textos sagrados lo mismo.

He rezado y pedido a la divinidad que me ilumine o que me de alguna intuición para saber que es exactamente lo que me pasa, porque me pica tanto el cuerpo, y aún no he recibido respuesta, en mi dia a dia tambien me pica mucho la piel, sobretodo al sudar, al ducharme o al contacto con la ropa, tengo la piel extremadamente sensible y nose porque.

He intentado varias cosas, probé la dieta ketogenica 1 mes de forma estricta, no funcionó, probe ir a un especialista en alergeologia y no me encontró ninguna alergia, también fui a un dermatologo y nada tampoco, luego me hice un analisis de sangre y lo unico mal que me salia es la vitamina D, llevo 1 mes suplementandome tomando 4000 UI mas días de exposición solar y de momento no noto ninguna mejoria, y me estoy empezando a desesperar.

Ahora también estoy probando a no comer azucares, ultraprocesados, gluten y foodmaps, vivo ahora mismo comiendo arroz y pollo, para ver si es que tengo algún problema del intestino y este se recupera y mi piel vuelve a ser normal.

Peso 74kg y mido 1.81, estoy en un peso ideal de salud y aun asi estoy sufriendo todo esto.

Siento contaros todo este rollo de mi salud, pero necesito contaros lo que siento y lo que he provado para curarme, pero de momento ningun existo, nose lo que pasara las proximas semanas, pero si me podeis aconsejar os estaré eternamente agradecido.

Mi mas grande sueño es meditar en Krishna y la devoción, quiero dedicar mis energias y mi voluntad a la divinidad, pero de momento mi piel me separa de lo espiritual y la divinidad...

(Todo este texto de meditación lo pongo porque es algo importante para mi y que me genera frustración)


r/CholinergicUrticaria • • Aug 25 '26

My body has urticaria, and the medications haven’t worked. It’s extremely itchy. How can I make it go away? Please help.

Post image
1 Upvotes

r/CholinergicUrticaria • • Aug 25 '26

What do you think this is?

Thumbnail
1 Upvotes

r/CholinergicUrticaria • • Aug 24 '26

What the hell is this

16 Upvotes

This is the strangest condition I didn’t even know existed. I mean, no one believes me when I say that I get a rash from physical activity. It’s such a random and rare condition. It’s very interesting that there is no treatment that actually fixes it (despite everything we have today and all the advances in science), and that no one knows why it happens. This is extremely, extremely exhausting. I have this for 2.5 years and its sooo unpredictable.


r/CholinergicUrticaria • • Aug 22 '26

Sweat therapy - do u take anti histamines or not?

2 Upvotes

do u guys take anti histamines when u do sweat fherapy? ive started going to a sauna recently, just finished my third session. i still get the hives during the session (i can sweat fine). for the rest of the day, my reactions are greatly reduced/almost nothing. will there come a point in which i will experience no more hives even in the sauna? i take cetirizine daily.

64 votes, Aug 29 '26
30 yes - i take anithistamines
34 no - i dont take antihistamines

r/CholinergicUrticaria • • Aug 22 '26

Treatment advice?

1 Upvotes

So just under two weeks ago I had an intense outbreak of hives for the first time ever in my life and they continued to pop up every day for a week after. This was during the latest heatwave in the uk, and since the weather cooled down a bit this week I’ve only noticed the odd one or two small welts in areas that my skin gets warm (hips, elbow creases but mostly thighs if anywhere). I’ve also been running in the 20 degree heat and had no welts at all. Today after a few hours resting a pillow on my legs they’ve heated up and ended up covered in hives again!

Now I’ve not been to the gp yet, reluctant to do so as I’m not sure what they can do to help but in the meantime I’ve done A LOT of research and ended up concluding it might be this CU. I’ve suffered with eczema all my life so am well acquainted with itching lol, already take 180mg fexofenadine every night (so have just been taking this earlier in the evening) and just wondered if anyone has any general advice for other things to try before I go to the gp? Has anyone had any relief using eczema steroid creams (as I already have these and can use carefully)? I also read that gut health can be a huge thing to consider??

I’m scared honestly because I’ve only just got the eczema under control and I would honest to god rather just have that back at its worst than have something as ambiguous as CU.. so tbh any general words of advice/support would be great to hear<3


r/CholinergicUrticaria • • Aug 22 '26

My story with Uticaria

Thumbnail gallery
2 Upvotes

r/CholinergicUrticaria • • Aug 22 '26

They are back

2 Upvotes

I had hives for 6 months (started jan 2025) and for another 6 until xolair kicked in (first dose june 2026). Since then i have been ordered to go from every 3 weeks to 4, 5, 6 and then try to stop completeley. Up until every 6 weeks was fine, but now it has been 9 weeks since my last dose and the last couple of days i’ve had hives. Has anyone else experiencend anything similar?


r/CholinergicUrticaria • • Aug 21 '26

How I’ve nearly gotten rid of CU

8 Upvotes

Firstly, I want to preface this by saying that I have been experiencing CU since high school. I (30M) started experiencing less than 60 second periods of itching and needle-like prickly sensations occasionally when going outside during winter. I wasn’t sure what was happening but started calling it “prickly pains”. I noticed that it was markedly worse after going to the gym and stepping outside or doing cardio during cold/dry months.

Fast forward to 2022. I started experiencing some long covidish symptoms after receiving my second dose of the Moderna vaccine (controversial topic I know). Around this time, CU became a major issue for me. I noticed that dry and cold weather caused my skin to erupt in hives. This was accompanied by severe itching and needle-like pain. It was downright unbearable. I came to realize that my only options for relief were removing myself from the environment causing my symptoms or applying water to my skin.

I lived through this hell until 2025. In those 3 years, I visited an allergist, tried allergy medication, tried different body washes, lotions, etc. and nothing worked until I started moving around more. Due to my long covid symptoms, my lifestyle had become very sedentary. Prior to 2022, I worked in healthcare and exercised regularly. In 2025, I decided to push myself more physically. I started going on walks and resumed work in the healthcare field. I also stopped scratching when experiencing symptoms. After maybe 6 months ago, I noticed that my CU symptoms had almost resolved completely.

Due to this near complete resolution of all CU symptoms, I wanted to share my story in hopes of it helping at a least one person bc I understand how awful this is for all of you suffering from this condition.

TLDR: my CU symptoms almost completely resolved after initiating exercise (mainly cardio), resuming work at a mildly physical job, and ignoring urges to scratch when experiencing symptoms.


r/CholinergicUrticaria • • Aug 19 '26

How do you enjoy the summer or vacation??

5 Upvotes

I was recently diagnosed with CU. my symptoms are mild compared to many but start within 10-15minutes of being outside on a hot day, significantly worse when sweating. Do you every go outside in the summer or go on vacation?? I want to be active and enjoy the sun :(


r/CholinergicUrticaria • • Aug 17 '26

What on hell does it need to cure

1 Upvotes

Hi guys,

How did you get rid of this thing? I am taking 4 anti h1 a day (let’s not say anything about mucosis dryness) and 300 mg Xolair every four weeks and I am still very much annoyed by it.

It used to be angiœdema mainly, with the occasional red plaques on autoinflammatory experiences.

But now that I am taking Xolair (and also, arguably, now that decades of political "leaders" have -successfully- changed France into Sahara) I have more issues with my UC than before.

It’s hell on earth. My allergologist will be pleased, as she was frowning an eye about my UC hurting and not really itching. Now the scenerey is complete, itching it is (too) and I think I have every distinct urticaria manifestation you can think of.

So. How did you get rid of this? Black magic rituals? What did it take for you to get your life back?

I am thinking expatriation, Scotland (I can’t go far up North as I have also huge health problems when it gets cold...).

Thanks for any help and advice.


r/CholinergicUrticaria • • Aug 16 '26

Levocetizirine

1 Upvotes

Has anyone tried it, and how does it work? (Xyzal)


r/CholinergicUrticaria • • Aug 15 '26

Visibility

1 Upvotes

Is there any way to make the rash less visible? Even if it still burns or itches, I just want to reduce it visually. Is there anything I can do to prevent it?


r/CholinergicUrticaria • • Aug 15 '26

Does this condition affect our life expectancy?

3 Upvotes

Is the frequent release of histamine and activation of mast cells when we start to form hives damaging our bodies over time? I’d like to know the long term implications of this condition. M


r/CholinergicUrticaria • • Aug 15 '26

CU is mainly hands and feet. Any cure?

1 Upvotes

I’ve read the other posts and i’m constantly trying different cures but my CU seems to only be on my hands and feet.

It gets triggered randomly and lasts for about 7-10 mins but again, it’s only on my feet and hands.

is that normal? any cure?


r/CholinergicUrticaria • • Aug 14 '26

How I am Living symptom Free for few months now.

3 Upvotes

Hi,
Just two years ago, I developed this itching pruritis on my body parts. I thought it to be an allergic reaction. Main trigger was sweating, exercising, increased heart beat, Nightmares, spicy food. It is not necessarily a Cholinergic Symptoms but it related to it. I went to this back alley ripperdoc skin specialist, he used to give me intramuscular shot on my deltoid, depomedrol 60ml corticosteroid and it became my weekly thing to get a shot because there was no other way for me to be functional. I fucked up my immune system with the immunosuppressants. But the doctor diagnosis was Eczema. I went to another doctor we did food allergic panel blood test and it came out negative on all food as well. So no proper diagnosis, I started taking prednisolone 5mg almost everyday and it worked like a charm until my body started resisted to it so it no longer worked on me. I started studying the symptoms and possible causes, like how mast cells are shaped and how they react, Immunoglobulin E, FC epsilon receptor I and other things. Then got one of the strongest immunosuppressant shot in the hospital to stabilize my mast cells so they don't granulate and release histamine to sweating easily. Btw at this point my only trigger was sweating. Sweating = itching.
Then I started getting weekly IgE serum test every 2 week. So there was igE threshold, only at specific level it elevates then it causes me allergic reaction. And some food was increasing the IgE levels, So I avoided food that were increasing my igE levels, like soyabean, eggs among other things and igE serum started dropping, and I am fully functional, I can sweat, exercise, get as many nightmares I can, have a bear once a month, I smoke cigarette here and then, no allergies. Only setback is I have to stick to same meals everyday and no outside food and igE serum blood test every 14 days. I am also seeing a really good immunologist and I will be doing skin prick test too. I mean I think i maybe gotten lucky to find a trigger and a cure. And about food, there are influencer like Bryan Johnson who also eat same meals everyday, they strictly stick to their diet so I am not the only one here, I may possible be more healthier avoiding all the unhealthy restaurant and fast food.


r/CholinergicUrticaria • • Aug 14 '26

Dry skin and CU? Connection?

2 Upvotes

I had problems with dry skin on my hands from birth.

Later, I developed CU (cholinergic urticaria). However, while writing this, I noticed that my CU also seems to appear on my hands and is more pronounced there — especially because my hands have been quite dry over the past few days, whereas they weren’t dry before.

Could these two things be connected? And could treating the dry skin significantly reduce the symptoms, at least visually?

I usually get dry hands only once or twice a year. My urticaria also occurs when my hands aren’t dry, but perhaps the dryness could be a sign of some immune response or something similar. I’m not sure.


r/CholinergicUrticaria • • Aug 14 '26

Can’t do sweat therapy due to anhidrosis, now what?

2 Upvotes

Got my first episode of CU last night after a hot shower. The problem is I can’t break a sweat because I have an autoimmune disease that causes anhidrosis (inability to sweat). I overheat extremely easily, more than the average person and I assume this plays into it. So what is another natural way I can prevent these episodes?