I’m at a breaking point. I have been dealing with cholinergic urticaria for a year. I am only 16, and I don’t know how much longer I can deal with this condition. My life before I started experiencing these hives was so much easier.
I want to go back to that point in my life so badly. I used to be able to dance for hours and not feel any discomfort, I was so active, and suddenly I began to itch. Now I can’t stand in my bathroom for 10 minutes without feeling the itchiness and pain. I feel like giving up, and I just wish I was dead at this point.
I hate cholinergic urticaria. I want to go back to my carefree lifestyle. I know I’m complaining, but I am so frustrated right now. I used to be able to eat whatever I wanted, I can’t anymore. I am going to try sweat therapy, and diet.
I’ve read posts on here for months now, and I stopped using deodorant with Aluminum, but it hasn’t helped. I hate this disease, it looks so ugly, and it’s caused me so much stress. I am constantly anxious at school, worried I’ll break out, and someone might see it and make fun of me. It’s spread from my stomach to my chest to my arms to my legs to my neck to my face to my back. It’s everywhere.
I am planning on seeing a dermatologist, and getting a patch test. I feel like I shouldn’t be allowed to live anymore, is this God’s way of punishing me? I’ve never done wrong, so why is it me? These thoughts constantly run through my mind. I don’t understand how anyone can live with this. I need help. I need a way to stop this, I don’t know how much longer I can go on. I feel so bad about myself.
My cholinergic urticaria has never been this bad. I will start a diet soon. It’s my last choice. I am so miserable and sad. I feel like the only teenager going through this in the world. How can I make this go away, will it ever go away? How can I go back to normal?
-Abi
Hivesguy says
Hello, Abi. I can definitely relate to the kinds of thoughts you’re having. I used to feel the exact same way. I literally wanted to just go to sleep and not wake up, because I was so sick of being dominated by hives. However, I am hive-free today, and life is so much better.
Your life is not over, and this is not how things are going to be forever. You have to hang in there. Definitely keep working with your diet, because it not only held the answer for me, but many others have noticed either cure or massive improvement in altering their diet. Sweat therapy may also help you, but I’d recommend talking to your doctor about it before trying it.
The only way to beat this is to keep a positive attitude, know that it will not dominate your life forever, and never stop trying ways to beat it. You’re going to have your life back soon! Hang in there.
Anonymous says
I echo the above comment, also please try cutting down on dairy. This really worked for me. It’s a long process and you may possibly have to alter your lifestyle but if you can make it manageable, that’s the best thing!
George says
Hey Abi,
I have been there and empathize with your situation. Have you noticed a different consistency in your feces when you have a hive flare up? I did.
Try getting probiotics from a pharmacy and use them as they instruct. Get the 20 billion microbes/capsule. I also use xyzal and zantac both first thing in the morning and before bed. They have cleared out and I have my life back. Give the whole thing a week and try to reduce your stress. Let me know if this helps.
Love
George.
sanela says
Hi sweetheart,
You are in the right place and we do understand how you feel. Just trust us, you will find the way to make this easier on you. I have a 14 year old daughter that seems to be going through the same thing. I can see on her body if she was upset and remember when it started for me, the same way when I was a teenager. For 25 years I did not know what that was all about, I kept asking and there was nobody with similar experience. I have other condition so I am on a gluten and lactose free diet and I notice that my hives get worse if I eat any of the stuff I am not supposed to. I learn to take quick showers, walk slower…I know, I was a dancer too at your age. For me, antihistamines help. The redness is there but at least it does not itch. Your body is teaching you something…listen to it . Stay with us. One day you will be helping someone knowing how it feels.
Love
s
Victoria says
You are definitely not alone! There’s also a huge group on Facebook where people share experiences and support each other. You should see some of the pictures, it’s unbelievable what people are going through… Persivere.
Anonymous says
I can truly understand how you feel, I’ve been dealing with this for 5 years. I had to go thriough a lot of testing, before I was put on xolair injections. Xolair has been awesome for me, it’s not a cure, but it gives me such relief! Hang in there, speak with your Dr and your parents. Remember, this is a stress related condition too, anxiety meds may be of help. Take care and please be safe????
anon says
From what I have been told (not by a doctor, just someone in a support group), benzos (anxiety meds) help b/c they are actually mast cell regulators. They help me a little. I go tomorrow to see a new allergist about zolair so this comment has me hopeful.
I never thought I had cholinergic urticaria until finding this site b/c I feel better in the sun and my sauna. And exercising. When I exercise, I will still get a rash but it won’t itch.
Disappointed to hear the carbon filters don’t filter much. I have terribly hard water and just bought one. It’s not chlorine for me b/c I can swim in a pool no problem. Showering has always been torture.
If it’s at all helpful to anyone….I had a two year glorious itch free run w/ a prescription dermal gel called Levicyn. We had a really humid Summer this past Summer and it stopped working.
Brian did you ever try the whole house filtration system? My landlord would be fine w/ it as long as I pay for it.
Marcia Hildreth McGrath says
My son got a lot of relief by not eating sugar. Try a very pure diet. He is vegetarian, and sugar-free, and has gotten amazing relief. Processed food and white breads, etc, tend to go to sugar in your bloodstream, so the less processed food, the better. You may want to watch the documentary “Forks Over Knives” and also “Eating You Alive.” Full of good, helpful information. I will pray for you. We live in a difficult world where things go wrong due to circumstances we didn’t create! God is not punishing you, I promise. If you can get through this, you will be able to help others, and you will be a stronger person than you would have been otherwise. Hang in there.
kelly says
Don’t lose hope Abi, you are not alone and it will get better.
1. I have found personally that a vegan diet has helped my attitude and some of my symptoms. I still get hives but the itching is almost completely gone.
2. This struggle will make you a stronger person in the end. Stress definitely heightens the symptoms so you should try meditation or yoga, something to learn how to cope.
3. In the end, yes it sucks…just isn’t fair, but nothing in life is. I’ve learned how to cope with this disorder and not have it prevent me from doing what I love. I love competing in triathlons and although I get bad flair ups during long runs, you learn to deal with it. If people are grossed out by hives on my face or arms so what? It’s not contagious so they’ll get over it. There are people out there who have to deal with a lot worse so I’m thankful I can still do whatever I want. And you can too.
Keep your head up girl, people care about you and it gets better.
David says
I’m a 16 year old high school wrestler and I’ve had CU for a year now. It’s absolutely horrible, and paired with my moderate eczema, is even worse. However, sweat therapy really has helped me. For me, I don’t care at all about the hives; all I care about is getting rid of the itch. The only time I ever get hives is when I wrestle, because of how much I’m sweating. Wrestling season has made CU more bearable for me because forced sweating everyday during practice makes it so I don’t feel pain during the days I have to wrestle. During the offseason, it’s different. I go to the gym every day with 3 shirts, a sweatshirt, and sweatpants. People will look at you weird when you get on the treadmill with so many layers, but after 10-15 minutes of running hard, I’m sweating and I feel normal again (and for the rest of the day). Last week, for some unknown reason, my cholinergic urticaria went away. I was able to go to the gym and lift in shorts and a t-shirt without sweating, and I felt normal. However, it was short lived and this week it is back. I’m praying that it will go away again permanently, as I was so happy during the entire week.
One thing that also has somewhat helped me is a low carb, low histamine / paleo diet. I haven’t gone on it for more than 2 weeks at a time, but it somewhat helped make the reactions less (got rid of my eczema as well).
Also remember CU usually isn’t permanent. Most of your life will probably consist of no CU symptoms.
Drac says
Hello,i understand how you feel,that’s exactly how i felt for the last 4-5months,painful and frustrated. I couldn’t do what i wanted,i couldn’t walk around in the sun,i couldn’t run,itchy anytime i was exposed to the sun or hot weather.
Mine has been on and off,it comes and disappears sometimes after a year or two. This past one i had was the longest and most frustrating,i was so frustrated that sometimes i would just walk out in the hot sun just so i could get the itching out of the way,after that i would feel better.Then after sometime i would be back to zero again and i have to start over.
I researched but nothing was forthcoming.
I made up my mind and decided i am going to sweat myself out of this problem,so this is what i did.
About a week ago i packed and i travelled to a really hot and humid area,i knew it would be hard but i had to try something. I woke up on my first morning and around 10-12 am when the sun was so hot,i would take a chair and sit right in the sun,with a bucket fool of cold water and a cloth and i would continuously wipe my entire body with the cloth after dipping it in the cold water. I would do that for 1.5-2hours,when the itching would begin to take effect,i just took off all my clothes and dip it in the cold water and put them on and sit right there in the sun,a great thing happened after two days of continuously doing this,i started sweating so much around my neck area and i could walk in the sun without feeling itchy,the bumps will appear but they were really smaller and the pain was gone atleast.
I kept doing this for 5 days and as am writing this i haven’t experienced it in a week and my body is sweating by itself again which is really a great feeling for someone who knows how frustrating hives are.
I hope this helps someone,it will be painful at first but its worth trying,it is so frustrating to experience this.
Am not a heavy sweater especially in my body area,i have always never understood why i always sweat so much on the palm of my hands and the bottom of my feet,in the past i always thought it was a problem,but in the past one week i think i began to understand why. I am happy now when i sweat on the palm of my hands.
Don’t despair guys,try sweat therapy,try and get your body to start sweating again,because for me i realised that every time i avoided the sun for a long period it actually became worse
I hope this helps someone out there
Syed Arsalan Tazeem says
Genuinely if person has idiopathic hypohidrosis associated with cholinergic urticaria then this sweat therapy works best
.But if it’s less assoviatea with it then you might be having other remedies to follow .
“Know the disease to say No to disease ”
Almighty has provided our body it’s own fighting mechanism but when we often forget with wat we are dealing with ,we make that our first mistake .
When you know wat has happened and wat is the mechanism behind its happening then your body and mind understands it and tries to adapt in such environment .It tries every now and thrn and ultimately we reach to the top level of adaptation .Finally we get rid of it .
CU is associatra with problem in maintaining balance of core temperature .example when you are exposed to sudden hot from cold temoerature your body becomes confuse in down regulating the temoerature .Team of doctors sit and find the remedy to control core temperature in a very smart and tricky manner by temperature exposure therapy which means you must be first exposed to the less warmer then eventully much warmer temoerature .
Dr Arsalan