I have had Cholinergic Urticaria for 9 months now, I’m 16 years old and played basketball for 7 years with great success. I want to share my story, thoughts and feelings.
First it was unbearable with severe itching every day when I got to school. In February I finally got an appointment with a doctor and she told me that there was a cure. I got medicine which didn’t work for me. Then she told me to take steroids for 10 days, that helped very much and on the 10th day when I went to workout I didn’t feel anything. But when I was done with steroids the itching and redness came back, so my doctor told me to do another 10 day run with the same steroids.
And then on the 4th or 5th day, I got depressed. While I was in school with my friends I felt good but when I came home after school I just slept until dinner and couldn’t concentrate on homework. Then I got suicidal thoughts and thought how I would take my life. I talked to the doctor about this and she told me to immediately stop taking the steroids. She sent me to a psychologist but I didn’t need therapy after I stopped taking these steroids. Now I can never take steroids again.
The doctor told me that if I took pictures of the redness on my skin she would put me on a waiting list for a xolair-omalizumab injection (the waiting list is because in my country only 10 people a year can get an injection because there is a certain quota on the medicine). A few days ago I had an appointment with the doctor and told her that now the itching has gotten a little better, the redness is gone and that I exercise every day.
Then she tells me that I can’t get xolair-omalizumab treatment because I “have to have the redness to prove that I have CU”, which is weird because I had already sent her the pictures. She put me on another medicine and said that if that doesn’t cure me, these is not much we can do. I will just have to wait until it goes away by itself.
She said that other doctors would tell me to stop exercising which is not an option for me. I am super-frustrated and feel betrayed after she said that I would get cured. Now over the summer my goal is to get back into shape because I didn’t move a muscle for a few months because I was trying to stay away from the itching, and my second goal is to stay away from as much stress as possible because I have discovered that when I’m nervous before a big exam or something I start itching. With these goals I hope the cholinergic urticaria will go away or at least fade so it won’t be as serious. But I know that the CU will eventually go away, it’s just a matter of when.
Now when I exercise I start by running and I just push through the pain, but that is not recommended for everyone as it could be dangerous for some. My diet is ok: I eat healthy, drink only water, and eat more protein than I did before. I decided to cut some histamines out of my diet like the ones you find in strawberries and pain apples. If I’m not mistaken the histamines can increase the itching. This should also be discussed with a doctor before trying.
After I decided to tell 2 of my friends about my cholinergic urticaria, I felt great and they supported me. I don’t know where to put this in my story but in the first appointment with the doctor she examined me and discovered that I was allergic to: cats, dogs, horses, some grass, some kind of tree and hay fever. I was only aware of the hay fever.
Thank you for your time,