I’ve been looking for a forum/site like this for a long time. I’ve been trying for years to try to figure out if my symptoms are all related or what could possibly be causing them. I’m hoping that maybe someone here might have had or known someone with similar experiences.
Some background information: 25-year-old Caucasian male in the U.S. Until summer of 2011 I had never experienced any symptoms of cholinergic urticaria. Ever.
In 2010 I was diagnosed with acute myeloid leukemia (AML), and it was determined that my best odds of survival would come from a hematopoietic stem cell transplant (bone marrow transplant from a donor). In May of 2011 I had my transplant and have been in remission ever since – that’s the good news. The bad news is in June or July of that year I started having symptoms of cholinergic urticaria. It took until early 2013 to be diagnosed, as there were bigger problems on my plate at the time.
Details about my urticaria: There is no visible rash present, but I do have dermatographic urticaria (skin writing). The itching is unbearable, and triggered by heat or strenuous physical activity. I also have the painful pins and needles sensations. I would classify these symptoms as severe.
My other (related?) health problems since transplant: depression, anxiety, irritability, decreased lung capacity (I am a musician, and so it is very evident in that regard), abdominal pain and diarrhea, back pain, and hypothyroidism. I sweat as normal… profusely, as I have my entire life.
I list these additional symptoms because I’ve read on some parts of the site that urticaria can cause or be caused by psychological symptoms. I’ve also seen connections to hypothyroidism, and have read about mastocytosis being a possible trigger of this condition.
My allergist tried treating me in 2013 with antihistamines – all of the major ones. When that didn’t work he tried periactin (cyproheptadine), which helps some and makes my condition somewhat manageable. In recent months it’s been getting worse, and I am dreading the upcoming summer. I have an appointment with him in a few weeks where I’m going to tell him things are getting worse and I’d like to try a different treatment.
I know this post is a little different, but I am in desperate need of help for all of these symptoms I’ve listed. I’m taking 12 pills a day to treat all of them individually, but I can’t help but think they are all being caused by one thing, or are related in some way. If I could find a true solution for one, maybe they would all improve? I used to think they were all unconnected and just complications of my cancer treatments. After reading some of the discussion on this site I’m beginning to believe it all may be connected.
Thanks for your time anyone who reads this lengthy post, and to the creators of this site. I feel a little less alone after reading more about the struggles you all are facing with me.