I have only had cholinergic urticaria for a year, and it drives me insane to know that there are people out there who’ve had it for 9 years – it’s crazy. It’s simply barbaric what we have to go through.
I’ve woken up at 4 AM unpleasantly with my belly, back, thighs, and legs burning and itching. And being angry doesn’t help either; it just triggers it more. But I can’t help but build up anger when I think about how I can’t do things like everyone else.
I can’t be in track anymore, or just sports in general. I can’t go out, regardless if it isn’t even that dark. I can’t enjoy a nice hot relaxing shower like I used to, and I can’t even get mad about it because it just makes it worse and it being worse just makes me more mad (vice versa). Then it drives me absolutely insane to think about all the other people out there like me who wish they could do the same.
I’m just a 14-year-old girl, I just wish to go back to only having to wear sunscreen making the sun was the least of my problems. Living in Texas doesn’t help. Sorry this is a random rant.
-Amy
Hivesguy says
Cholinergic urticaria is a VERY frustrating disorder, Amy. I totally feel your pain (literally). However, I’d encourage you not to let it get you down. I used to wake up in the middle of the night and run into the shower. I’d have the flu and be breaking out in hives from my fever. I became a recluse for a number of years. It was horrible. However, my hives are now gone. I believe that your hives will get better in time, so don’t lose hope. Keep working with a doctor to try solutions, and hang in there.
Shaun says
Amy, I’m sorry to hear about your CU. Many of us have found relief from our diets and understanding that food can be the cause or at least make the CU worse. I would recommend you speak to your parents about getting the book that is on this website. And don’t give up. There are times it can be completely overwhelming, I know, but there are many people who have been freed from this. The sleep thing was horrible for me too. I had to buy an air mattress. Most normal mattresses trap heat from your body and as a result you get yourself warm/hot and it causes the reaction. I found the air mattress to be a huge help because the heat it not trapped. Lastly don’t hesitate to post on here. People are going through the same thing and they care about others that are suffering too. I will be praying for you.
Shaun
Marcia Hildreth McGrath says
Enduring hard things is so rough at the time, but it gives a person a fortitude and an toughness that helps in other areas of life. If you can deal with this, you can deal with lots of other hard things that life will throw at you. So hang in there. Work on your diet, as Shaun said. It seems most folks have gotten the most relief from tweeking their diet, seeing what works and what doesn’t. I highly recommend the book also. Dealing with CU will also bring out a sympathy for others going through hard things. Tough times brings with it the gift of true understanding.
Most of us have ranted a bit too, so we totally get it! I will be praying for you.
Anonymous says
Benadryl and prednisone work for me that should help
John Wilson says
After having them badly for three years I gave up bread and pasta. Still get them a little when I wake up but barely ever during the day or night. I believe the grains now are super processed and I think could go a long way in causing them. Occasionally have a hamburger – maybe once every two months and pasta too so after doing a crash diet you can have the odd grains but after a week of substitutes (look at paleo diets) you don’t miss what you thought was essential at all. All the best. It’s a horrible thing to have.
Cher says
Be careful using too much prednisone over a long time. My BP spiked (to be expected and it never made me feel bad). The worst was I suddenly (over a year) developed significant cataracts in both eyes…..eye dr said it was a direct result of the prednisone. The other thing was that my most recent very bad skin reaction (6 months ago) was caused directly by the drug since I had taken too many series. Ended up at the Mayo Clinic hospital where this was confirmed.
At Mayo I was put into total body wet wraps (vinegar water or plain water soaked cloths wrapped over a thin layer of cortisone cream) three hours at a time, with an hour break, 24-7 for three days. Covered with blankets feet to neck including hands were wrapped.
Immediate itch relief though the visible rash took much longer to disappear. Gradually decreased steroid cream continuing with moisturizer twice daily. They showed me how to continue at home with soaked long johns.
I went from two 180 mg antihistamine (Zyrtec) tabs twice a day to occasionally. From two showers a day to one. Only spot application of steroid cream as needed. I know now that I’m very sensitive to chlorine so can no longer swim in pools as was my routine, even salt water pools — which really make me sick, but ocean or lakes are ok, I also installed a shower filter.
I still itch slightly but rash and inflammation is gone. I continue with my health protocol — mild exercise, sun light, occasionally NIR light treatments, sauna, lots of cooked veggies, fruit, organic eggs and meats, probiotics, real salt, real food vitamins, some iodine. Try to keep elimination pathways clear—kidneys, liver, bowels. I make and take daily a kidney tea (parsley, asparagus, ginger, etc) and keep bowels regular including occasional coffee enemas.
The Mayo treatment was in March. I have suffered urticaria for five years. My energy is not up to par and I no longer do regular yoga or jog, etc. Rest when you need to in between high energy days is so important and a positive attitude! But then I’m 70. ????
Sorry for so much info, but you never know what may help someone else. The best of luck to all of you young people struggling with this condition!
Calvin Graves says
Sweat therpy really helped me I could workout and sleep through the night mines finally went away after 3 years out the blue I bought a sauna off Amazon and used it every morning was tuff but got me through the day
Debby Clements says
Hi Amy – I posted this a couple of weeks ago, but will post again, in case you did not see it. I am 66 and had this hit me in June 2016. I wasn’t doing anything different in my life, not eating anything different. It started sporadically – a reaction every couple of weeks, but within a month, it was an every day thing. First time I was just sitting outside eating at a restaurant. Second time, I was in my house – steam cleaning the carpets and got hot. Then it got to the point that I’d get warm at work and have a reaction; or be at a tense movie and it would start. Anything that warmed up my body or increased my heart rate. I bought cold packs, that you pop the bag and they turn cold, for my purse and car, so if it happened and I wasn’t near a bathroom where I could put cold water on myself and cool down, I’d have some relief from the cold packs. I went to 5 doctors, including an Indian doctor who reads eyes. (yeah, sound hokey, but this woman is right on with her diagnoses.) She said it was due to a build up of yeast in my body and so did one of the dermatologists. I started eliminating a few things, but didn’t help much. Then this past February, I went on a serious diet. My husband and I booked a 17 day dream vacation to Europe and I wanted to lose weight and a lot of it. So, I totally cut out bread, pasta and sweets. I stopped drinking cokes and any sodas in 2003, so now I only drink water, coffee, tea and lemonade. I tried to limit myself to 40-50 carbs a day and 1200 calories and not eat any processed foods ( anything made from a mix or box, no frozen TV dinners). So, I ate a lot of salad – lettuce, tomato, carrots and salad dressing – balsamic vinegar. No creamy dressings. I don’t eat cheese. I ate fruit – organic when I could get it, and whole foods. Fresh green beans, corn, zuchinni… I ate baked potatoes with butter about 3 times a week. Steamed vegetables and some yogurt. Boiled eggs and deviled eggs. Lots of broiled meat, fish and chicken and home made soups. I also stopped using ALL artificial sweeteners – stopped buying “sugar free” stuff. I went back to using a teaspoon of real sugar in my coffee and tea. And, after about a month, something happened… I did not have a bad reaction when my body temperature rose, except one small reaction at an outdoor concert in May and it lasted about 5 minutes and was mild. And, when we went to Europe and went on our cruise in June- I toured every day and did not have one reaction and it was really hot during the days. Not one itch, no stinging!! It was amazing. And, on the cruise I ate bread – every day and I ate desserts – sometimes several times a day, pasta and pancakes on many mornings and almost everyday on the 12 day cruise, I drank 1-3 Pina Coladas. One of the big differences is in Europe and on the cruise ship ( I asked about this) – they use flour that has no GMO products and no MSG and not many preservatives. They bake fresh bread every day and at the end of the day, all old bread is thrown out. It doesn’t last because there are no preservatives. Also, because of all the walking we did, I only gained a half a pound on vacation. AND, I sweated during the day when we were touring or even sitting out by the pool – My arms, legs, back and stomach sweated… first time in 2 years!!! Then I came home and decided I would go off my diet for a few weeks and enjoy a few things I had been missing and then in July I’d go back on the diet. I had lost 28 pounds and want to lose another 25-30. So, for 2 weeks of my diet break – I allowed myself a couple of candy bars. I ate pancakes off our work breakfast bar in the café twice and I made waffles (from a mix) at home one morning. I ate toast in the morning with my boiled eggs. I ate fried shrimp and I ate pasta. One week after I got home, I started having the stinging again – really bad. One week of American bread and a few processed foods and the UC was back. So, I am convinced this issue is caused by something in the food we eat. Not really an allergic reaction, but it IS causing a yeast overrun or something. When I first started having this, I was taking quite a few supplements, so I cut out everything except a multi vitamin. I’m going to start back on 1500mg of coconut oil -but, you have to start slowing with coconut oil..1 capsule for 5 days, then do 2 capsules for a week, then three. If you start with 3 – you will get fast yeast die-off and run a fever and feel like you have the flu !!! I’m going to order some pancake mix made in Barcelona and compare the ingredients to my mix and see what the difference is. I may even order some bread mix and start making my own bread. Maybe there is a kind of flour and pasta in Sprouts or a health food store that is purer and isn’t made from GMO wheat. I’ll post again to let you know how that works.. For now, it’s back on my diet that I was on, which actually was not that hard after the first month.
Start writing down everything you eat. Look at the ingredients. If you can’t pronounce it, don’t eat it.
Good luck.
John Wilson says
Hi Debby,
Coincidentally I’m the same age as you and my UC started badly like you, out of the blue, in 2015. Last year I came to the same conclusion as you that it must be bread as that was a staple of mine. I’m in New Zealand and we do have great fresh ingredients down here but i’d read that over the decades flour around the world just isn’t a fraction of what it was in our grandparents day. Anyway, I went on a very similar diet to you and after maybe six weeks definitely saw a huge decrease in daily rashes. I’ve kept at it but like you I’m not firm on it. If I’m at a cafe and they’re serving bread I’m all in, but I just don’t buy it anymore. My UC after I guess a year of this change is still there but I barely think about it any longer as if it does come on only seems to last about ten minutes and then fades.
So I still drink wine, eat a little chocolate each day because I like too. I’m sure if I sacrificed these two things I’d be in the clear, but how boring that would be!
But that was great reading. Thank you!
Debby says
‘ve just ordered some bread made from coconut flour. It was expensive, but if it works, I may buy a bread maker and go back to making bread using coconut flour. I also had someone bring me back a bag of flour from Barcelona. If it is the bread GMOs or preservatives, making bread at home with purer products will fix some of the problem, but I still won’t be able to eat bread from restaurants… and I really like firehouse subs! I think the issue is yeast overrun. Sugar causes yeast to form too, and sugar replacements are said to be even worse, but I’ve started back on coconut oil, which is supposed to really help kill yeast. My skin on my arms and legs looks horrible now. I’m covered with little raised lines that looks like de-hydration lines, yet I drink 50-70 ozs of water a day now. I think it’s from having blocked sweat glands and even though I have a pool and am in water a lot, I don’t think my skin is absorbing the water because of the blocked glands. Hopefully, I’m on the road to figuring it out. one more thing, the msg from 2 years ago has basically been taken off the market, so products don’t show mono-sodium glutamate… but it was replaced by other products similar to msg and these may be causing some issues.
Other Names for MSG: The A to Z Guide
MSG Accent
Autolyzed Plant Protein
Autolyzed Yeast
Aginomoto
Calcium Caseinate
Citric Acid (when processed from corn)
Gelatin
Glutamate
Glutamic Acid
Hydrolized Plant Protein (HPP)
Hydrolized Vegetable Protein (HVP)
Monopotassium Glutamate
Monosodium Glutamate
MSG
Natural Flavoring
Natural Meat Tenderizer
Sodium Caseinate
Senomyx (wheat extract labeled as artificial flavor)
Textured Protein
Yeast Food or Nutrient
Yeast Extract
https://www.steadyhealth.com/topics/reoccuring-yeast-infections-splenda-use
https://www.thecandidadiet.com/artificial-sweeteners-and-candida/
I also eliminated as many of the sugar free products that I could from my diet starting last Feb… I have not started back on them, but since I got back from vacation, I have eaten quite a few things that I’ve missed – all sugary. Like a Reeces candy bar M&Ms, chocolate frosted flakes, a few pieces of cake. I gave myself two weeks, now I’m back on my diet. All I eat now is a 3oz container of orange sherbet ice cream and key lime flip yogurt and grapes and fruits. But, I ate a lot of sweets in Barcelona, too, and bread. I’ll keep working on it , but eliminating bread and artificial sweeteners ( both Stevia and Splenda) seemed to work for me . Good luck to you.