So backtrack a few months around December, I would be able to sweat but after I would itch a bit and it was fine, lasted maybe 2 minutes. But this last month, I think it’s gotten worse.
I can’t go in the sun, I always have a fan going in my room, and I can’t use the bathroom. If I sit down on the toilet trying to No. 2, my thighs will start getting aggressively itchy. I wake up in the middle of the night dying and almost in tears. I always have my fan pointed at me. I play Xbox and my hands break out, and they are at room temperature, my ankles have been getting attacked lately too.
Since I have the fan going, my torso hasn’t been breaking out that much. I tried steroid pills that my doctor prescribed, and they didn’t work. Now it’s been almost 2 months since I’ve gotten blood work, and I’m starting to give up.
This has taken a big toll on my life, and I told myself if they can’t figure me out by August 25th, I’ll do it myself. (I think you will understand what I mean.) I’m beginning to think there’s no hope, whatever has helped other people I’d like to know. I’m open to almost anything to try to fix this.
My doctor won’t give me any antihistamines, they wanna know what I’m allergic to, even though i told them it’s just the heat that attacks me.
-Jason P.
Anonymous says
what do you regularly eat?
Anonymous says
Hi Jason, we understand what you’re going through therefore please don’t lose hope! And don’t take matters into your own hands, there’s always hope Jason and we are here to support you!
Shaun says
First. Please don’t give up or consider hurting yourself (I think that’s what you meant or how I read it). As long as we are alive there is hope. It can be overwhelming, it can be discouraging and I too have lost hope at times but honestly I got to a point where I just started trying to figure out how to live with it while I’m trying everything from my diet, to how much water I drink, to several different medications, etc. The diet hasn’t cured me but it reduces the intensity of my attacks. Food can definitely have an impact. For the vast majority of us there is no easy fix. I would highly recommend an elimination diet (try the one in the book that’s offered on this site) and take it from there. This is a forum filled with people that do care so keep us updated and I will be praying for you.
Shaun
Shaun says
Sorry should have added this to my first comment. Couple of things I do (not as a cure) to help me survive this:
Keep several ice packs in the freezer and I apply them as soon as I start getting an attack. So even while you’re gaming. I also take them with me when I leave the house so I can always stop an attack.
Bought a cool pillow like $60 on Amazon. It’s a lot I know but I had attacks almost every night and it helps because most pillows trap heat.
I sleep on an air mattress for the same reason. Mattress usually trap heat. You can get one for like $40. They are MUCH cooler.
Understand that once your body gets warm even in the house from doing things it can cause an attack the moment you enter somewhere the temp has increased (I.e outside). So pay attention to how warm you are feeling
Debby Clements says
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. 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 so I could put cold water on myself and cool down, I’d have some relief. 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 things, but didn’t help. 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 total cut out bread and sweets. I tried to limit myself to 30 carbs a day and 1200 calories and not eat processed foods. So, ate a lot of salad – lettuce, tomato, carrots and salad dressing – balsamic vinegar. No creamy dressings. I don’t eat cheese. I ate fruit, and whole foods. 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 artificial sweeteners. I went back to using a teaspoon of real sugar in my coffee and tea. 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, pasta and pancakes many morning almost everyday on the 12 day cruise, and I drank 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 everyday 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 pancakes and waffles 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. and when I go off the diet, I will slowly add back in items and see when the symptoms come back.
Anonymous says
Hey I just wanted to say don’t lose hope! I used to get the hives from head to toe just going from my house to work. Recently it’s been in the upper 80’s and humid in Wisconsin. I just dreaded seeing the weather and thinking about how bad it would trigger my hives. My doctor prescribed Zyrtec 2x a day. It never seemed to help really. After looking at almost every post on this forum I came across someone that had used pepsid ac in conjunction with Zyrtec. Willing to try anything I ran to the local drugstore and picked some up. After a few weeks of taking one every morning I’ve noticed significantly less hives to almost none at all. Have you tried this before? I’m also an avid xboxer so if you wanted someone to chat with and play some games hit me up.
Best of luck, WIHives
Tomas says
if i understood correctly what you meant there, don’t. living in pain is better than not living at all, trust me.
it is a mysterious disease and even though there is no cure until it just goes away, everyone finds something that helps them minimize the symptoms, try what others have tried, experiment with diets, etc. i personally have never tried diets, portable sauna is what did it for me. of course my CU is still here, but I can live, do daily tasks and it’s not half as bad as it used to be, at least i don’t suffer anymore. in the starting of summer, when hot weather just came around I thought that’s it, I couldn’t go outside, I always needed a shade, because i would break in itching instantly, but now I got a hang of it and thanks to sweat therapy, I am feeling alive again 🙂 don’t lose hope
Brent says
My 18 year old son has been dealing with extreme CU for the past 1.5 years. Looking back, he had mild symptoms as early age 14. To put in perspective what he has been going through- he was a competitive amateur skateboarder with a future path of becoming pro. His life was skateboarding. However, due to the extreme debilitating nerve pain and hives associated with CU he did not want to skate again. Any micro sweating event will trigger his CU (spicy food, a moment of stress, radiant heat, exercise, etc..). After seeing many of the top doctors in San Diego and being told there is nothing more we can do for you, my son lost hope. We adapted our lifestyles and found “light” swimming/surfing in the morning before the heat of the day or around sunset was ok since the water was helping managing body temperature, but oddly he would get hives/pain only in his arm pits. When not in the water his pain/hives were mainly on his trunk but not in his armpits. Also his sweating was progressively becoming more delayed to the point where he could not sweat anymore.
As a parent, I did not give up and did not accepted the responses from the various nationally ranked specialists that evaluated him. We kept going to different medical groups in the region, asking questions, and I kept searching medical journals to find the names of any local physicians that were publishing and/or on the editorial board for CU related medical articles. I found one doctor at Scripps Clinic. After approximately 9 months of dose escalating a Gabapentin/Cymbalta combination for pain and 5 months of Xolair injections, his hives are significantly better and the pain is more manageable.
He has returned to skateboarding, but still has a significant amount of pain (but now not debilitating). If he exercises very aggressively for about 15 minutes on an elliptical/treadmill/indoor spinning and pushes through the almost debilitating pain of the first sweating event, each subsequent sweating event is progressively less painful as long as he does not take a shower. Once he takes a shower, then he needs to start the process all over again in order to skate without the almost debilitating pain. The 3 med combo has reduced the overall CU symptoms enough to allow for him to push through the pain of the first sweat. Prior to the 3 med combo the pain was too intense. The 3 med combo also seems to reduce the number of nights he needs to have a fan blowing on him while sleeping and he feels less “overheated” when simply sitting on the couch, and he has regain the ability to sweat again. With that said, the meds have only provided minor relief to pain from long drawn out sweating events such as being in a warm room or being in a car on a hot day (but the hives and inching are significantly reduced). So he only attends early morning classes in college and the rest of his classes are online.
He has seen almost every type of specialist and has had a significant about of blood work and other types of testing, and changes in diet. His CU is not related to food/diet/preservatives or known medical conditions that have similar types of symptoms (neurological diseases such as MS, blood cancers, autoimmune diseases, etc…). Our next step is to see a sweat specialist at either Stanford University or the Mayo Clinic. After that I may consider fining a way to have a referral to one of the CU physicians in Japan that have published papers on successfully treating CU with isolating one’s own sweat to treat CU.