Hi everyone, please don’t take this post as negativity on what is a great forum. Unfortunately, I have battled with cholinergic urticaria for 13 years and feel like I can’t cope anymore. I’ve been strong for so long trying to beat it by diet, exercise and antihistamines. Nothing has worked for me.
The usual things make me break out change in temperatures, excessive exercise, showers and the big one going out in the sun. The anxiety it has caused me is now overwhelming. I am in a state of depression and desperation.
I have dedicated my life trying to find a cure but it seems as if there isn’t one to me. I don’t really know why I’m writing on here other than to tell my story to people who know what its like to live with this condition… I guess I need my faith restored, I feel like only a miracle can save me. 🙁
Thanks,
Phil
Tanya says
Don’t give up. Have you tried taking sugar completely out of your diet?
Anonymous says
Thanks for your reply I’m not the type to throw in the towel usually but it has affected my life so much I’m in a bad place. I have tried cutting it out, but if I’m honest havent cut it out completely for an extended time, should I include cutting out fruits as well? sweeteners? I’ll try anything…any advice would appreciate.
John says
Of course, no sugars or sweeteners. Some blueberries or less sweet fruits should be fine. They are natural whole foods, but avoid citrus. Refined sugars are poison in any but the tiniest quantity. Also, what else are you ingesting. Drugs or alcohol of any kind…take a serious look at those films I mentioned. The people in them got off all of them.
Anonymous says
No drugs although I smoke, occasional drink. I will take the advice everyone gives me trial and error. Compared to most I am healthy mainly meat and veg, gym everyday.
Nathan says
Don’t give up phil! We know it’s definitely not easy and I’m sure each of us had doubts in our minds about if we would get better but it will happen! Sooner or later it will happen, stay strong 🙂
Anonymous says
Cheers Nathan means a lot I hope your right, I know I need to keep going I just want a fulfilled life.
John says
Phil,
When I had hives at the worst in 1986 I tried the Gerson therapy which involved using moderate daily doses of niacin, coffee enemas and juices etc. I became sensitive to the niacin and had to stop, and if you do it too long there is a danger for liver problems, BUT it really knocked the CU back to a level that was noticeable but not overwhelming. Then it was in remission for a long while, and now it is only mostly seasonal and mild. That therapy was a diet used for cancer at that time. If you have tried everything then try that, but if you have abandoned the diet then look at it again. I live on rice and vegetables and a little fruit and beans, a natural, sugar free plant based diet and it will help in so many ways including all types of inflammation, heart disease etc. Watch Fat, Sick and Nearly Dead or Forks Over Knives on Netflix for amazing tales of CU cure with simple diet changes. Saves money too. I work like a field hand and exercise all day and my food bill last month was $130. So, forget the depression and get busy on this new attack. The niacin as I recall was maybe 500 mg to 1000 mg. Keep away from slow release and also you should initially get a good flush when you take it…sort of reminds me of the sauna therapy, but beware of using long term and do your homework on Gerson.
Anonymous says
Cheers John I will follow your advice and watch the Netflix programme and look into the diet you mentioned, reading these comments are helping me, I need to focus on positivity I know I’m not afraid to fight just thought It would have passed by now
John says
Phil, you are on your way. Everything will be allright. And if you are taking antidepressants then please study the interesting fact that the worst depression was helped more my a 30 minute a day meditation practice than the drugs, so you can save money on that too. Go for it, my friend!
Anonymous says
Thank you John I’m actually not on meds for my depression I refused them as I’ve seen people around me get messed up and addicted to them, I’d rather go cold turkey and battle through it as hard as it is
John says
You are very wise. We love you and good health is before you, but the smoking will negate all your efforts. Think of yourself soon completely healthy and with a healthy breath. It is not worth it. It is upsetting to see tobacco companies profiting from your suffering. Don’t let them!
olivia says
Dont lose hope Phil! I cut back on dairy and try to stay as calm and chilled as I can and thats provided considerably positive results. Get out there, go for a walk, although CU is a physical and mental torture we’ve all got a lot to be thankful for. I hope we find a cure for this soon!
John says
Olivia, You are quite right, and sometime when I itch I am grateful I have this nagging problem to keep me on a healthy diet. All my neighbors are literally dying of heart disease and cancer. I itch a little, but I am skinny and happy for every day of life in this beautiful world! Thanks in part to CU
Anonymous says
Thanks Olivia it has been torture especially as I’ve hid it from everyone probably why I’m so anxious. I know we all are suffering, I hope we find a cure.
Hector says
Hello Phill
Do you have CU in summer or winter? I’m just curious, some people cured in summer or winter.
Stay positive.
Anonymous says
Hi Hector I have it summer and winter the hotter or colder it is the worse it is
Anonymous says
I know I am lucky so far, that I don’t seem to have cu as severe as others. I noticed you said you have tried antihistamines, have you tried histamine blockers? I take loratidine and ranitidine twice daily and am mostly controlled. Right now I do have some large welterweight breakouts each day (seasonal allergies not helping), but none of the small itchy ones. You being stresses is probably also contributing to the outbreaks, though telling someone not to stress rarely helps l o l. Good luck !
Anonymous says
I haven’t tried blockers no do they work well you think? Your right about stressing making it worse but its hard not to stress out about it sometimes
Jannis says
Hello everyone,
I would like to share my year and a half experience with hives. I was taking the Xolair shot. It worked but I would still breakout. I avoided all foods that flared hives even changed soaps , detergent etc.. I kept researching and researching and then researching some more.. Long story short.. It was an overgrowth of yeast . Anyone who has taken a round antibiotics and DID NOT take a probiotic afterwards, may have a great chance of yeast overgrowth. Jus think about how many times throughout your life you’ve taken antibiotics. For some women, that’s a first class ingredient for a nerve wrecking yeast infection. See, the doctors don’t mind taking your money for shots, co payments, and the pharmacy absolutely loves you.. You have to be your own advocate for healing and finding cures. First, start with asking your doctors for diflucan and begin a probiotic capsule regime daily.. Then watch your symptoms slowly disappear.
If I wasn’t clear enough, jus Google hives and yeast overgrowth. It’s a clear connection and it will open your mind to a new perspective for your condition.I pray this helps all.. Oh and even if you’re a guy,, it works for you, too?
Sincerely,
Jann
John says
Excellent information, Jannis. Thanks for sharing. Fungal overgrowth on skin and in gut has long been a suspected factor for my CU. Thanks for sharing! Glad you found success and freedom.
Anonymous says
Have you tried fasting at all? Sometimes it helps to fast a few days and let your body rest for a while. You may want to try getting nightshades out of your diet. That helps some people. The purer your diet and lifestyle, the better chance you have of some success. I will add you to my prayer list. I know this is very difficult. Bless you.
Anonymous says
Thank you, I haven’t tried fasting yet, I will post any success I may have.
Gary says
Hi, to eliminate food as the culprit do the elimination diet like the author of this site. Do it for a few weeks to see if your symptoms get better. If they do, then you can slowly add foods back to find the real cause. It can typically include nuts, dairy, gluten, or sugar. In my case it is gluten. As long as I avoid all foods with gluten, I can manage. It is hard because there are so many foods that contain gluten, but it is worth the effort. Fortunately there are now many alternatives to gluten, even gluten free bread. I honestly believe that CU in many cases is caused by some sort of allergy. You just have to find what is causing it in your case. Like someone else said, take ownership because doctors are clueless about CU.
Finally, do not give up! Better days are ahead!!
Anonymous says
Cheers Gary, diet is definitely going to be my focus for now, I’ve been really disappointed with doctors they are clueless as you say they are just trying to give me antidepressants they’ve made me feel like I just need to accept it, that there is no cure like the life I dream of is impossible.
Anonymous says
Hey phil, in your original post, you said that you tried an elimination diet and exercise to know success. What foods dod you try to eliminate, I’m just curious.
Anonymous says
Hi, I mainly cleaned up my diet in general, eliminated wheat and dairy and cut right back on sugar
Anthony says
Keep on trying using trial and error. And be systematic about it. Just remember, one diet change/treatment tried is one step closer to finding the right one for you.
Anonymous says
Thanks that’s good advice
Anonymous says
Hello everyone. I myself suffered from heat hives around 19 years back. I tried so many things but to no avail. Gradually my condition worsened to clinical depression. I was in dire straits. ..suffering like hell. ..so much so that death seemed to be only option. ….my mental condition was extremely horrible. I kept analyzing. ..reading up. Visit in forums ..everything I cud to get well…..finally my prayers were answered and everything made sense and I started improving continually. …that was 6 years ago. …..I feel overwhelmed by the time and opportunities missed out.