Does Cholinergic Urticaria Always Itch or Tingle?

Post by: brockham on May 07, 2008, 09:32:56 AM

Hello all. This forum is a great idea.

So basically, about 6 months ago, whenever i exercised in the cold i would get a rash up my arms, but over the last few months, this has been getting worse and whenever i get a little hot with raised heart rate, I get those little bumps anywhere on my body! .. nice.

But the thing about my spots is that i do get the initial tingling around the body in one or two places, but once that has passed, i will get the spots/bumps on my body, but they will not itch? They may be a little uncomfortable but from what i hear from other sufferers its a very annoying itch? Am i lucky? or does this come in time?

And unlike others, i do sweat quite alot so is this why i dont itch?

Im just about to start on an antihistamine ceterizine and hope it works! I went to my GP and he was really baffled, do you think its worth going to a skin specialist or shall i just keep trying antihistamines?

Thanks and good luck with getting better!

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Title: Re: My Cholinergic Urticaria.. A little help please

Post by: billysielu on May 07, 2008, 10:11:32 AM

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I read that the itchy/pain is caused when some histamine stuff touches nerve endings, if yours doesn’t then you’re very lucky!

additionally, i have, to date, tried streoids, cetrizine, loratadine, ranitidine, fexofenadine, and the evil drowsy hydroxyzine. they all suck.

i also saw a specialist, who changed my medication setup – but she also stated that taking steroids was very bad, i didn’t ask why. basically the gp will try a few things, then refer you to a specialist if he/she runs out of ideas – at which point the specialist will just prescribe you more/different anti-histamines – coz thats really all there is at the moment.

some guy keeps posting about upcoming research, but don’t expect to get anything like that – these things take years to approve before they are used on humans.

that’s basically why we have this forum, to try and figure this out for ourselves! we have plenty of test subjects if anyone has anything they want to try heh. home-brew medical experiments for the win!

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Title: Re: My Cholinergic Urticaria.. A little help please

Post by: brockham on May 07, 2008, 11:42:22 AM

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Im debating taking two ceterizne (10mg) a day to see if it will work better, it wont hurt me will it?

I may also start running again to see if it makes it go/improve.

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Title: Re: My Cholinergic Urticaria.. A little help please

Post by: billysielu on May 07, 2008, 11:55:51 AM

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i guess you should check it with your doctor, but ive been taking 2-4 times what im supposed to and it hasnt done me any harm.

hasnt worked either tho… just costs more.

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Title: Re: My Cholinergic Urticaria.. A little help please

Post by: HivesGuy on May 07, 2008, 05:54:12 PM

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Great post & questions brockham & welcome to the forum!

My answer to your question about the itchyness, with me that was my very first symptom. I had a terrible tingling/burning/itching feeling that was extremely intense on my body. I didn’t really notice the bumps until I had a severe outbreak. I also had flushing on my body.

It may be helpful to see a dermatologists or a person that specializes in cholinergic urticaria. I would not take additional antihistamines unless your doctor tells you to do so. Only follow the instructions of your doctor.

Basically, antihistamines provide some relief for some people with minor symptoms of Cholinergic Urticaria, but others don’t get much of a benefit. Personally, they are nearly worthless for my particular case of Cholinergic Urticaria. I agree with billysielu, it would just cost more & probably would not be a good idea unless your doctor says to do so.

But instead of taking a greater dose, talk to your doctor. He or she may recommend a different type or a different dose.

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Title: Re: My Cholinergic Urticaria.. A little help please

Post by: born_to_fight on May 07, 2008, 09:46:47 PM

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Quote from: billysielu on May 07, 2008, 10:11:32 AM

i also saw a specialist, who changed my medication setup – but she also stated that taking steroids was very bad, i didn’t ask why.

From what I have heard steroid, applied topically can suppress the immune system for that area, it also prevent collagen formation ( a component of your skin) and hence causes skin thinning.

I live in a tropical country that is hot and humid all year long. However after being active in sports I have a sudden stop of activity(due to injury) and mostly stayed in a cold and dry air-conned placed to prepare for my exam. Then my Cholinergic Urticaria starts to come.

The first 3 months of my Cholinergic Urticaria is full of pain to the point that i will bring ice cubes just to walk to my bus stop to prevent me from sweating. However after my derm give me a green light to exercise again, I begin a desensitization programme. I run everyday/ once every two days to sweat for about 15-20 minutes and was on Telfast daily. After three weeks, my pain(those prickling feeling) level went down significantly and I stop taking medication completely.

Now I am fortunate that I am no longer on medication (for about a month) and the pain is very manageable even during heavy exercise. Whenever the Cholinergic Urticaria symptoms start to creep up, i just have my run to ‘sweat the pain out’ and this keep my Cholinergic Urticaria at bay.

From what I have heard there are different types of Cholinergic Urticaria, probably 2. So I’m not sure if inducing a prolonged sweating can work to all people. But from the stories from other people I ‘ve heard this is worth the try.

Also I notice that if I stay in an air-conned place for most of my days, when I sweat, there is more chance of a Cholinergic Urticaria attack.

This disease could be genetically linked and I don’t expect this thing to have a complete cure, at least until people start to cure things at molecular/ genetic level. But this should not be a reason for living a less fulfilling life, everybody has their own obstacles they have to overcome in life. And many with worse have proven that human is strong, when the mind is strong. Sometimes I do feel sad and all. Many here have started a family and being affected by this Cholinergic Urticaria. I feel worried too, I know it’s not easy to have this and being responsible for a family. So I guess we just have to be strong and never allow ourselves to stop fighting.

Best of luck 🙂

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Title: Re: My Cholinergic Urticaria.. A little help please

Post by: brockham on May 09, 2008, 10:43:13 AM

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Quote from: born_to_fight on May 07, 2008, 09:46:47 PM

Quote from: billysielu on May 07, 2008, 10:11:32 AM

i didn’t ask why.

But when you do the heavy exercise, do you come up in hives/spots all over your body? Thats my main problem, not itching or severe pain, i just get very conscious that people are looking at my skin!

Thanks everyone. i may go for the gluten free diet, as i do find days at college when i dont get to eat anything and just drink, my urticaria is alot better.

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Title: Re: My Cholinergic Urticaria.. A little help please

Post by: billysielu on May 09, 2008, 02:07:10 PM

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Quote from: brockham on May 09, 2008, 10:43:13 AM

But when you do the heavy exercise, do you come up in hives/spots all over your body? Thats my main problem, not itching or severe pain, i just get very conscious that people are looking at my skin!

I have 3 triggers.

1) Light excercise (e.g. walking half a mile)

2) Heat (normal warm shower / sunny day)

3) Stress (caused by both of the above, being the center of attention etc)

I have 2 symptoms.

1) Extremely painful prickly sensation, like being in a bath of fire ants.

2) Covered in red dots head to toe (looks like measles)

Because I can tell when it’s going to start, I do tend to leave the room until the attack is over. My colleagues have all seen it, but it’s not a particularly pleasant thing to watch.

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Title: Re: My Cholinergic Urticaria.. A little help please

Post by: born_to_fight on May 11, 2008, 04:42:28 AM

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Quote from: brockham on May 09, 2008, 10:43:13 AM

Quote from: born_to_fight on May 07, 2008, 09:46:47 PM

Quote from: billysielu on May 07, 2008, 10:11:32 AM

i didn’t ask why.

But when you do the heavy exercise, do you come up in hives/spots all over your body? Thats my main problem, not itching or severe pain, i just get very conscious that people are looking at my skin!

Thanks everyone. i may go for the gluten free diet, as i do find days at college when i dont get to eat anything and just drink, my urticaria is alot better.

Hi Brockham,

My Cholinergic Urticaria pain level is proportional to my severity of rashes. At its peak, my Cholinergic Urticaria reddish bumps will go all the way to my arms.

Currently, most Cholinergic Urticaria red spots/bumps is localized to my trunks and my face become red with no bumps which looks pretty normal. Only skin-coloured wheals/bumps can be seen on my arms after a long run which normal people won’t notice. And after that I’ll become Cholinergic Urticaria free temporarily even on hot days and no Cholinergic Urticaria bumps anywhere.

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Title: Re: My Cholinergic Urticaria.. A little help please

Post by: jga on May 11, 2008, 10:10:44 AM

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Quote from: brockham on May 09, 2008, 10:43:13 AM

Quote from: born_to_fight on May 07, 2008, 09:46:47 PM

Quote from: billysielu on May 07, 2008, 10:11:32 AM

i didn’t ask why.

But when you do the heavy exercise, do you come up in hives/spots all over your body? Thats my main problem, not itching or severe pain, i just get very conscious that people are looking at my skin!

Thanks everyone. i may go for the gluten free diet, as i do find days at college when i dont get to eat anything and just drink, my urticaria is alot better.

For me, when I exercise, I don’t feel that much itchiness on my legs but when I go hit the showers after a workout I see my legs are covered with millions of red bumps. So pretty much, sometimes I don’t feel itchiness at all or maybe just slight tingling, but they do show up all over still, maybe the severity of the itchiness is influenced by mental aspects cause I wear pants when I workout and am not conscious of what’s happening to my legs like I am with the trunks of my arm (which I always predict will get rashes as soon as I lift weights for a few minutes).

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Title: Re: My Cholinergic Urticaria.. A little help please

Post by: Hivesgirl on May 18, 2008, 08:56:02 AM

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Quote from: born_to_fight on May 07, 2008, 09:46:47 PM

Also I notice that if I stay in an air-conned place for most of my days, when I sweat, there is more chance of a Cholinergic Urticaria attack.

This disease could be genetically linked and I don’t expect this thing to have a complete cure, at least until people start to cure things at molecular/ genetic level.

I’ve noticed this too. At my place it’s always cool (no matter how warm it’s outside, I don’t know how, I think it has something to do with the floortiles or something). And when I go to the library (where it’s warm), from the moment I get from my bike, (and I don’t understand why it doesn’t happen while I’m riding!) the heathives start on my ancles and knees.

Unfortunately, my doctor indeed said that it’s a genetic thing. I don’t really know if I have the same Cholinergic Urticaria as some other people here on the forum. (the itching isn’t really painful, more uncomfortable) My family has always had a tendency to become easily red in the face during sporting or when embarrassed. We also get red hands during the winter. First our hands are cold, from being outside, but the moment we get somewhere warm our hands become red and very hot. But without itching and it passes quickly.

But I’m the only family member that has really Cholinergic Urticaria, you know, with the itchyness and rash. Very annoying to make people understand what it is. :-

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Title: Re: My Cholinergic Urticaria.. A little help please

Post by: acceptor on June 08, 2008, 04:54:15 AM

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hi again

just wanted to anwser your question properly, from my experience if you havnt got the itchiness so far i wreckon your cool, cause mine started right away..

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Title: Re: My Cholinergic Urticaria.. A little help please

Post by: threesixmafia on June 10, 2008, 07:32:55 PM

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i just want to be able to listen to a simple techno song without getting stabbed by needles. sorry if i sound harsh, but it kinda irkes me that anyone can be so concerned over simple appearance when for some it’s at the point of shingles where ur nerves go on fire.

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Title: Re: My Cholinergic Urticaria.. A little help please

Post by: brockham on June 11, 2008, 04:02:07 AM

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I did quote in my thread that ‘I maybe lucky’, which i know now that I am. I didnt really ‘understand’ Cholinergic Urticaria when i wrote this, but i do far more now and it sounds like the tingling is by far the worse part of Cholinergic Urticaria.

Sorry threesixmafia, you gotta stay fly i i i i……im sad.

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Title: Re: My Cholinergic Urticaria.. A little help please

Post by: threesixmafia on June 11, 2008, 11:36:02 PM

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it’s cool. though it’s not tingling. get 10 ppl each with a needle. and stab you for 10 minutes. that’s honestly how it feels. want to know how i know? i’ve took a needle and stabbed myself a quarter inch deep 10 times and the level of pain is about the same.

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Title: Re: My Cholinergic Urticaria.. A little help please

Post by: billysielu on June 11, 2008, 11:56:28 PM

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k dude, when i first got Cholinergic Urticaria it hurt just as you described, and left very red spots all over my body.

5 months later it’s hardly noticable and the pain is much lower.

things i did were getting more sun, more excercise, strict healthy diet. stick at it

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Title: Re: My Cholinergic Urticaria.. A little help please

Post by: Baf on February 05, 2012, 02:25:37 PM

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Hi ALL,

This condition is well known in France and there is a medication for it and it works fine. It stops hives itchy conditions etc..