Cholinergic Urticaria, anybody have it? Or know of it?

Im just curious, just don't wish to feel so alone with what I have and if anyone on here shares the same issue. Its extremely painful and its somewhat a torturous curse.

For the curious

Cholinergic Urticaria is a medical term used to describe a subcategory of physical urticaria (hives). It is characterized by a hypersensitive response in the skin as a result of the body increasing in temperature (passively or actively), or the precipitating release of sweat.

Individuals may experience a cholinergic urticaria reaction in response to any activity that increases overall body temperature (or causes a sweat release). Some examples include:

Taking a hot shower or bath
Eating spicy foods
Exercising or doing physical activities that increase body temperature
Stress or anxiety
Emotional response (sadness, anxiety, anger, laughter)
Transitioning from a cool environment to a hotter environment without allowing the body time to slowly acclimate to the temperature difference (such as walking from a cold room to a hot room)

Extreme itching, stinging, and/or burning sensations in the skin, which may come in waves or random areas. This is often described as feeling “stung by bees” or “bitten by fire ants.”

This is also what it looks like -

reply to post by Tea4One


The best thing for you, is to be aware of your triggers, and take steps to prevent them....such as wearing light weight clothes if your trigger is heat related.
Do what your doctor tells you to do. However, there has been some success with taking simple over the counter Allegra and Tagamet together to help ward off attacks. Allegra is a histamine1 blocker and Tagamet is a histamine2 blocker. Basically different types of antihistamines. Tagamet is marketed as an antacid, but it works by blocking a specific histamine buildup.

I'm 31. I got a horrible rash all over (predominately on my legs) in the summer of 1992; that's 19 years ago now. That rash only stayed for the summer. After that it didn't go away, it changed.... I itch. Always. Sometimes there is a rash, sometimes there is just a rash because I gave myself one by scratching.... no dermatologist has ever been able to diagnose me but this condition describes it to a tee!
years and years of hiding my legs. as a teenager I just feared someone would see how gross I was. Winter was the most painful season for sure, cold outside hot inside constant temperature changes drove my skin crazy and in turn drove me crazy... trying not to scratch... eventually I got acrylic nails. the thickness of them allowed me to continue scratching without really hurting myself. Sometimes I would wake up with welts. from scratching in my sleep.... I don't know any solutions. I know when I stopped using dyes and fabric softeners and perfumes and stopped wearing makeup I got a little better. I still itch but nothing like I used to. Also I started wearing long skirts and looser lighter cottons than denim. that really helped too

I really do hope it clears up soon. What I just read on wikipedia gave me hope." that it could last as long a s 10- 30 years before it clears up". that means maybe someday as much better as it's gotten, that it could clear up completely. even after all this time. I could be a "normal girl"

what do you do to handle it? bare it? contain yourself?
do you experience any other symtoms? adiction? emotional ups and downs?

reply to post by IyamanTheKnow


I hope so for you too. It really is terrible.
I can't really do anything to contain it, I just have to "deal with it."
I have my emotions just low because of it really, it's driven me to depression. No ups at all.

reply to post by Tea4One

I can imagine! It does sound and look like it must be miserable.

When did this start? Have you had this all your life? Have you looked for a support forum online? I was recently diagnosed with an autoimmune disorder and I was able to find an online support group that has been very helpful. You might give that a try - if you can find one, they may know about treatment options you haven't heard about.

reply to post by gwynnhwyfar


Had it for around 4 years. Yeah I have, im glad ones working for you, its just not really been helpful for me. Even the treatments they suggest haven't worked. Im stuck with it I think.

reply to post by Tea4One

I wish I could give you a hug. That must be so hard to deal with, especially if even your involuntary emotional changes trigger it. I mean, you can avoid spicy food and exercise and try to minimize temperature changes in your environment, but we can't really prevent our emotions. I think I would try to control all the factors I could, and try to pursue any new treatments that come along. Do you live somewhere that has a winter season? I'm wondering if living somewhere with a fairly steady temperature year round, like California or Hawaii, would help at all. It seems like anywhere with extreme seasons would be bad for you.

reply to post by gwynnhwyfar


Aha cheers. It is a pain. I live in England so its fairly up and down, winter is really cold and then summer its quite hot so kind of a huge change. I don't know, I'll just have to soldier on im afraid.

Aww you poor thing.
I can sympathise, I do have tremendously sensitive skin and in the past have had bouts of prickly heat lasting the whole late spring - warm autumn months.
Wouldn't wish it on my worst enemy.

It doesn't help that the weather is so unpredictable and winter is no exception as you can wrap up warm for the outside, but the minute you go inside a shop or elsewhere it suddenly becomes unbearably hot and you wished you'd gone out braving the cold in a t shirt.

reply to post by Tea4One


I understand your need to not feel alone. Cholinergic urticaria is one of those things that many people struggle with, and mainly to get answers. Unfortunately many patients with cholinergic urticaria are diagnosed with idiopathic, meaning that there is no determined cause.

However, the good news is that there is lots of information out there about this type of hives, and most people find that the best treatment is in learning how to manage it. This why I would recommend checking out www.cholinergicurticaria.net.... It's the best site that I have seen on the topic and is packed with information. Plus there is a forum that is very active where people discuss their experiences and try to help each other - so if you want to connect with others who have this problem, that can be an option.

There is also www.hiveshealer.com... which offers information and articles on many types of urticaria. Hope this helps, and hang in there - I know that information about this problem is hard to come by.

In the mean time, have you taken a look at your diet, and what the triggers could be? I understand that heat or sweat can trigger it, but sometimes certain foods that you wouldn't think of as having a "heat inducing" effect on the body can. Let me know how you do with this

reply to post by Hero4ADay


Thanks a lot for the information. Greatly appreciated