Hello,
Firstly, sorry for my English. I am 21-year-old man. I have been suffering from cholinergic urticaria for 6 years. I was taking lots of antihistamines, but as you can imagine, it didn’t do much. This condition is ruining my life. I know that I can’t do anything without hives.
I feel like a weirdo and in fact I am, because I constantly have to reject all invitations to the parties etc. I can’t even talk to girls, since I am afraid of being red 3 minutes later. I used to be a footballer so I was working out very hard, but now I am not even able to run 50 metres without pain. I can’t even laugh too much.
At school I am very shy and silent, because I don’t want everybody to see me like this. Exercise therapy helps a little bit, but I think only because I am dehydrated and body can’t sweat more. Unfortunately hives are very visible on my fair skin. I hate to hear from everybody that this condition is not that bad or that there are much worse diseases like cancer. I agree, but what can they know about having condition like cholinergic urticaria?
I know that they would be just like me. This condition is ruining me physically and mentally. What kind of life is this? In summer I can’t go out, because of sun, winters are horrible, because of entering from cold to warm places. I can’t find a holiday job since I am not able to work physically. I am sure that I would be a completely different person without urticaria.
I would like to try diet changes, but I don’t know what to avoid, and things like gluten or salt are extremely hard to avoid. I dream about a day I will be a normal, healthy person again where I could do everything I want. Now I feel like a vegetable or alien and my teenager years were a disaster and unfortunately I will never get them back.
Thanks everyone for reading and for this site. I know how much harder life is with cholinergic urticaria. I suppose all we can do is to have faith that each of us will be cured someday and I hope that it will happen sooner or later.
Thanks,
Kizarny
Karen says
I’m sorry to hear of your struggles. Try Rosadyn and/or Eredicane for flushing (talk to a doctor to ensure it’s safe for you). Then seek out a homeopathic doctor for evaluation.
Bates says
Hey Kiz,
Hang in there! This condition can be beat, but the terms for victory are different for every person. Normally this condition is seasonal for most people, but it seems like you have it year round. Mine clears up in the summer (cleared late this summer for me though) and comes back around winter.
I have never changed my diet but I avoid sugar on principal. I do take a lot of vitamins though. I take a 1-a day multivitamin, 2 L-lysine, and 1 B-Complex everyday. I take them to actually help battle another chronic condition I have (mouth ulcers), but those are more stress related but the vitamins do make me feel better mentally at least. So I don’t know for sure if they have helped my CU or not.
My CU issue was my body would not sweat when warm, and it would result in horrible pain and hives, the pain was everywhere the hives were only on my arms. I forced myself to break the barrier this summer. I would make myself break out, then cool myself down and then go right back outside into the sun, and I would take hot showers to force a break out. After about 2 weeks of this type of behavior, as uncomfortable as it was, I haven’t had a breakout since and my body is back to sweating normally this summer.
Normally if you can break the barrier early in the day, you should normally be okay for the rest of the day. That’s how it was for me at least but this condition works differently for everyone. All I can say is don[‘t give up, and explore all the options, and just know that some of those options are going to hurt but if they help you in the long run, it is definitely worth it.
AC says
Yes, I noticed since I went to Orlando and began sweating with the aggravating itch it seemed my UC went away. The more I stayed in the sun and tolerated the itching,it calmed down.
Anonymous says
Hi Kizarny,
As the others have said, there isn’t any fix all cure. I think i’ve had them for years, but I didn’t notice. just the itchy underfoot or itchy palms…but 10 weeks ago, it broke out everywhere and would not stop 24/7 for 9 weeks.
I’ve calmed it now, but its only now that I realise about what the little itches were that came and went.
I’m not sure if it ever goes away. What I’ve learnt so far is that there is a way to size it down a lot.
I’m convinced allergies are a red herring. Probably 5% or less of us have this condition because of an allergy. What I think is that there is a problem in the body that is ringing alarm bells.
I’ve tamed mine to pretty much nothing – just slightly itchy feet. None of that bulging nettle rash all over my body..
Start with 24 hours water only. After that, restart the immune system with plenty of live Bio yogurt, full fat, any flavour. Nothing else except water. After 2 days, add spinach, eggs, anything you like except any fish or meat. Add lots of fruit on day 3 or 4 – cantelope melon is perfect. Eat coconut if you like it. Day 5 add Vit D3 – not Vit D. take it in tabs to avoid fish. Day 6, go back to meat – any meat except fish. After that, just go back to normal, but dont eat late and keep away from starch (pizzas, rice etc) just for a few weeks.
Try it. It might just get you closer to the answer.
PS if you itch, use extra virgin olive oil rather than chemical based soothers. It really works and costs nothing in comparison. (Always check with a doctor before trying to ceasing any medications or therapies).
anonimous says
Expose yourself to it. Don’t stop (unless your doctor advises against it or you show signs of anaphylaxis). Get a bottle of ice and be with it all the time but don’t stop. Also, go to your doctor and ask about a pill called Montelukast. I took it for like 3 weeks and my symptom went away. Get expose to the sun light to raise your Vitamin B levels and try to enjoy the summer boy! I was devasted because this and now I am an almost free-man. I still feel it when I start to the hot, but after a while it goes away completely. I remember when I couldn’t even laugh without a reaction. Thanks god I am better now.
Also, and more important is that you go to church and pray everyday to get better. That will help you a lot! Mentally and spiritually.
Anonymous says
Your story is very similar to mine and i can relate to everything you say except in the summer i dont get the urtecaria at all maybe its because of the extreme hot weather im in. So I suggest Talking to your doctor about trying things with heat (sauna,steam), exercising with alots of clothes, and drinking like 2 liters during the exercise and do maybe stuff like weight lifting and heavy squats these are the things that get me hot and sweaty the most and just keep a good diet dont eliminate anything except all meds the only pills i think will actually help you is multivitmains and fish oils.Hope we all get better 🙂
Micki says
Also the bumps on my arms usually do not go away. Some of them do but most of them stay there.
Anonymous says
I feel your pain, pretty much exact same story as mine, I’ve had it 13 years now, I too dream of a life without it but find it hard to believe I ever will have that, it’s made me worse person aswell more negative and bitter because I wanna be out there I’m a outdoor person live for sports and socialising outside. People who don’t have it don’t understand what it’s like they think it’s nothing when really it’s effects are huge. Keep going all any of us can do is hope for a miracle and try our best to manage it. Good luck ??
Amy says
I highly suggest everyone read what hive guy posted! https://www.cholinergicurticaria.net/candida-albicans-yeast-and-cholinergic-urticaria/ It is all to familiar to me. I have come to believe it is not so much a food allergy I believe it’s sugar and yeast or just one of them. Cholinergic urticaria comes from sweat but I can’t go by sweat, so I looked up what comes from sweat which includes water, salt and sugar. My mother in laws mother was allergic to sugar. I was ready to try anything it’s been 7 years of suffering with no doctor to help. I began to think it was to much yeast in my body. After a week of absolutely NO sugar it started to disappear, I am still trying to see if it goes away completely but suggest you read his article. It is worth a try.