I’m an 18-year-old male, and I’ve had cholinergic urticaria for about a year and a half now. But it’s only been unbearable for the last 6 months or so. Around spring 2017 I started noticing that my skin would get itchy and irritated, but it was never unbearable and I could still live my normal life. It wasn’t until this spring that I started to notice more serious symptoms while I was in gym class.
Since then it has progressively gotten worse. I can’t be in a hot room, I can’t exercise or really exert any energy at all for that matter, I can’t take a hot shower, and what has effected me the most is that I can’t even go outside in the sun without breaking out. When I break out it’s usually very painful, and itchy hives appear mostly on my arms, chest, and back.
Being a very active and athletic teenager, this has really taken a toll on my life. I live in the DC area and have seen countless allergist and doctors, but everything they’ve recommended has not been working. I’m on multiple antihistamines and other medications, and am currently receiving Xolair once a month and have not seen any improvements whatsoever.
The only things that seem to work is air conditioning and jumping a cold pool or shower. I am about to begin college in a week and I am extremely concerned that I will not be able to walk to my classes and just live a normal college life. I plan to start an allergy-eliminating diet and see if that works, and I’ve seen many people on here recommend sweat-therapy, but I’m worried with how bad my condition is that sweat therapy will only cause me to experience more excruciating pain rather than stop my breakouts.
If you guys have any suggestions of what to try please let me know. Cholinergic urticaria has just effected my life too much, and I’m willing to try anything to get rid of it. I love reading many your stories on here, they give me hope that I can get through this soon.
Thank you guys so much,
-Derek
Debby Clements says
I’m 66 and got it suddenly in June 2016. I don’t get raised welts, just red stinging skin any time I get too warm. Happens at work, inside while cleaning, or outside. Cool water or cooling down eliminates the stinging. I don’t sweat from my neck down. I carry those breakable pouches that turn cold at all times to cool myself down. No medicine helped me. However, back in Feb I went on a diet to lose serious weight before a three week vacation we planned to Europe in June. I cut out breads, pastas, cookies, sweets, excess sugar. I ate whole foods. salads, all kinds of seafood – shrimp, salmon, trout, grouper, crab, lots of baked and rotisserie chicken, grilled meats, pork, steamed and grilled fresh veggies, baked potatoes with real butter, homemade soups, boiled eggs, deviled eggs. . The only thing I ate from a can was beans – which I made baked beans from. I ate BBQ sauce on the pork – no high fructose corn syrup.
I ate a small bowl of orange or lime sherbet each night or those little cups that are around 100 calories. I also ate the key lime flip yogurt a couple times a week. I don’t drink soft drinks, so continued drinking lots of water, teas, lemonade, and one cup of coffee a day. So, I had a pretty varied diet. but, I ate nothing made from wheat flour. A strange thing happened – I had no more reactions to heat, no redness, no stinging or itching. We went to Europe for 3 weeks, including a 13 day cruise, where I ate bread several times every day, pancakes for breakfast almost everyday, ate desserts every night and often at lunch. I drank 2 or 3 pina coladas every day. Wine at dinner. I had lost almost 30 pounds and when I got home I had gained back one half pound. of course, we did do a lot of walking while we were touring. So, I came back and decided to take a month off the diet. I ate 2 firehouse subs, had a waffle from waffle house, at a couple of candy bars, ate Italian one night. 6 days after I got back, the CU came back. The breads over there and most of their foods do no contains the preservatives our US food contains. their bread is thrown out each night and new bread is baked. it doesn’t last because there are no preservatives. They don’t GMO wheat either. I am convinced that my issue is from some new preservative that is being added to our wheat flour/bread. I’m back on the diet for the past 3 weeks and have been back out in the heat with no issues again. When I go off the diet this time, I’m going to start adding back one thing at a time and see if I can pinpoint the item that is causing me issues. Good luck to you. debra.
Derek says
That’s actually really interesting, I never even considered that it could be the preservatives or GMOs causing this. A new diet will be very hard for me but I’m willing to try anything at this point… hopefully it’ll work for me as well!
Brent says
My 19 year old son has been able to manage the extreme hives and nerve pain with a combo of gabbapentin, cymbalta, and xolair. It took several months for the combo to work. He was very active as a competative skateboarder then CU hit when he was 17. He is finally skating again but the first sweating event is still painfull but manageable however subsequent sweating events after the first sweat are almost pain free. Our impression is the cymbalta and xolair helped the most.
Wendy says
Hi Derek,
I’m 24 year old female and I have been struggling for three years with Cholinergic Urticaria. My symptoms were really similar to yours. When the reactions started, it wasn’t too bad and it was something that I could hide. It got to the point in the last year that even walking outside, I was covered with painful welts all over my body on a daily basis. It really started to affect my confidence.
To attempt to get my Cholinergic Urticaria under control, I took several types of antihistamines, vitamin C, Quercetin and Bromelain. I even tried sweat therapy for a little while but I found it too painful and it takes a few hours for my reaction to fully disappear. I looked on forums like this and became disheartened when others found that medication worked when it simply was not cutting it for me.
I tried an allergy elimination diet back in June for ten days. In the diet, I cut out meat, dairy, nuts/seeds, legumes, gluten, soy, nightshade vegetables, citrus fruits, caffeine and alcohol. I pretty much ate non-citrus fruits, non-nightshade vegetables and rice for ten days. It was a really difficult thing to stick to but as soon as I passed the week mark, I stopped getting the stinging welts altogether. After the ten days, I had to stop the diet as I found that it was too difficult to follow when abroad and eating out at restaurants. I intended to start the diet again when I returned back home.
When I introduced everything back into my diet (all at once), I never got the reaction like I did before. I get little pin pricks on my forearms but no stinging welts and nothing that can stop me from carrying on my day. To get these stinging pricks, I had to exercise and really exert energy. I no longer got reactions from walking outside. While I do intend to go back to the diet to find out what food it is that has caused the cholinergic urticaria, I found that doing the allergy elimination short term was a great day in getting rid of the symptoms quickly. If I knew that doing an allergy elimination diet for ten days could stop be from breaking in in hives, it’s something that I would have done years ago.
From going through the forum, I haven’t come across anyone who has followed an allergy elimination diet and then stopped it – everyone seems to be writing in the midst of their allergy elimination diet or have found the food that they are allergic to. I know in your post you say that changing your diet to accommodate an allergy elimination diet is challenging for you. It may be worth giving it a go short term and then start eating normally again.
If you try it, please let me know how you get on. 🙂
Anonymous says
Hi i am a 50 year old mother of 3 and I have had exercise induced hives pretty much since I was 17. It started when I was picking up a ball from the bushes while playing sports in the summer and then every time thereafter when I exercised. I had to stop playing sports as also my throat would get swollen making it hard to breath and my skin was covered with welts. We went dermatologists and allergists who prescribed an anti-histamine before exercising and to carry an epi-pen.
I learned overtime that if I keep up with some daily exercise routine it was manageable and I also noticed that if I had a little bit of a sun tan it was less.
I also can get hives from sudden temperature changes like going in the ocean after being on the beach for a while.
Ok so I just turned 50 and I went for a comprehensive hormonal check-up and turns out my thyroid was low, specifically the T3 free which in normal blood work is not checked. I have had this imbalance for decades. I started taking a thyroid medication 3 weeks ago went on vacation for 2 weeks. Got to the gym last week and remember thinking oh not many hives this time even though I had not exercised for over 3 weeks. Then it just hit me the low thyroid imbalance caused these hives!! I started googling this and found this website. After 30 years I figured it out. Maybe this could help others with CU.
Anne says
Hm! Thanks for sharing!! I’m also looking for a cure as well. Lab tests came back ‘normal’, slow diet changes, anti-histamines and NO improvements after 8 years. But I’m going to get the thyroid test next and see if a new medication will help. 8 years is TOO long and I don’t want to deal with this for the rest of my life. I know everyone’s different but I worry when I start a family they may get UC too and my body won’t be able to handle motherhood. Thanks for sharing!!