Posting my experience of CU and offering advice to those with the condition as it not only affects sufferers physically but also psychologically. Talking with those who have the condition and understand what you are going through is a massively help.
My Cholinergic Urticaria (CU) started when I was 13 years old, I am currently 25 and live in the UK. I think most people here will know the exact details of their first major event of CU. For me, it was October, I was sitting in the kitchen with my parents eating dinner. It was hot due to it just being made and after about 3 mouthfuls, I could feel the intensity from the kitchen light increase on the back of my neck and a sudden warm prickly tingling sensation overcame me and I ran to the bathroom to scratch and pour cold water over my arms and torso. That’s when it ended immediately but when I went to sit down again to continue eating, it came back after a short period of time and I had to go back to the bathroom. My parents asked me what was wrong; I explained and they were baffled. They got me a doctor’s appointment, I was sent for blood tests and everything came back normal.
These intense episodes continued to happen throughout my secondary school and would only happen through the months of November and April. I could be sitting in a hot classroom, doing a presentation to the class or playing football. As being a professional footballer was my dream, it caused me a lot of issues and I found ways to adapt as doctors had no idea what I had. I had tried most suggested therapies; Antihistamines, Beta-blockers, Doublebase cream, Cognitive Behavioral Therapy and mindfulness; none of which worked for me.
I would wear a cold damp t-shirt under my football shirt to keep my body cool but within 10 minutes, the t-shirt was now dry, I wasn’t sweating and I was feeling the CU effects and had to get pulled from the game whenever it got too intense. By the time I was 16, I had mentally given up on the dream of playing professional football and throughout the months of December and March, I had stopped playing football altogether.
Yet somehow, I managed to get a scholarship to America to play football (soccer) and figured I could manage it as the season runs from August to November. It was a win-win and I accepted the offer. At 18, I played my first season with no issues but when the winter break hit and I was sedentary for long periods, CU would return. I studied Athletic Training which is a degree that deals with on-field management, rehabilitation and conditioning of athletes to return to play and an array of other skills in the remit of sports.
Whilst reading a textbook for class, I came across a condition that sounded exactly like mine. You guessed it, CU. At this moment, I was fully engaged in getting to the bottom of it myself, only consulting with outside help if there was anything out of reach knowledge wise.
For the next 4 years, I experimented on myself to find the triggers that affected me, how long it would take to trigger an episode, how long an episode would last, areas affected, the methods the alleviated my symptoms and what would happen if I tried to ignore it (I’ll answer these at the bottom).
In December 2014, I had self-diagnosed myself with CU and started to look through research papers in dermatological journals. That’s when I found sauna therapy. We had a sauna at my university that was for staff but as it was connected to the Athletic Training room, I used it during Spring Break when no one was around.
*CAUTION* Sauna therapy can help but can also induce very intense episodes for prolonged periods and possible anaphylaxis (allergic reaction causing inflammation that can narrow airways), though rare is a medical emergency. I advise if you do this therapy for the first time to take someone with you and have an epi-pen handy (or make sure the establishment you are in has one available just in case).
After 2 minutes in the Sauna, my episode started, it lasted 12 minutes. After that, I could feel sweat under my armpits and on my forehead. I would then exercise and be able to get through the next two days with no major issues; still some sensation. It would return after a couple of days but I would top it up with the sauna again. When it was summer, I wouldn’t need to use the sauna.
Psychologically, CU has affected me massively. I have declined invites to parties, social gatherings and outings due to the embarrassment it has caused me in the past. I hate going to pee because I have localised episodes in my buttocks. I have developed anxiety in anticipation of episodes happening because I can recognise the triggers and in my attempt to avoid them (some of which are unavoidable), the anxiety triggers an episode. I have felt like no one understands what I am going through and the medical professionals are not showing the compassion that they were taught about in school. Even family members don’t quite get it. I have had multiple instances where I have quit playing football and slipped into depression.
Through my experience and current studying, I am still looking into CU but more in-depth. Any updates I find, I’ll be more than happy to share. I am also happy to talk with anyone who has felt like they do not have anyone that truly understands what they are going through and how it is affecting them. Quality of life with any condition is important.
I am currently in university studying in MSc Physician Associate Studies and playing football for a team in the 6th tier of English Football. I urge CU sufferers not to give up on their endeavours to find what works for them. Be positive in your actions and your thoughts, for the day will come when you are able to manage this condition. I hope sharing my experience and story has helped others.
Peace and love,
Answers from above and other notes:
Triggers: Nervousness/Anxiety about presenting/Talking passionately on a subject, Exercise, Hot temperatures (Places, hot rooms, going from cold to hot environments), spicy/hot foods, 10+ minutes in hot showers and clothing that traps heat to keep you warm (Polyester/Sports shirts/etc).
Areas affected: Whole Body. Can be generalised or localised. Trunk
(front and back), Neck, Scalp, and Arms tend to be my most affected (May be different for you). As for localised, I’ve had it unilaterally (down one side of my body with the other side unaffected). On another occasion on my left wrist & hand but it didn’t go past the watch I was wearing towards my elbow and shoulder.
Time to trigger an episode: I’ve found it to be situational. It really depends on what you’re doing. Whilst exercising, I’ve found that the time is linked to intensity. More intense means it will come on quicker.
Length of episodes: Full body visible episodes (Hives/Wheals) with no interventions lasted anywhere from 5 minutes to 25 minutes. Full body episodes with interventions lasted only a few minutes. Localized episodes with no interventions lasted a couple of minutes.
Intervention methods: Cold showers/water, cold air, patting instead of scratching and scratching (which makes it worse overall at first but can be relieving).
What would happen if I would ignore/continue doing what I’m doing: The intensity would increase. It is very hard to ignore if you are feeling it all over your body and you’re busy giving a presentation/playing a sport/doing exercise etc. However, if you manage it, the intensity decreases, almost as if whatever causes the CU has lost its willingness to break you down. This does not mean that it has gone, the intensity has just lessened for the time period. It may come back within the next few minutes just as intense if you haven’t intervened/removed yourself from the environment.
There have only been two winters that have been completely CU-free for me. Those winters I was inside a majority of the time or wrapped up very warm when I went outside which leads me to believe that keeping your body warm and not exposed to the cold ambient temperature is a factor in CU, hence why it begins when it does and ends when it does.
A steam room works just as well as a sauna, maybe better in my opinion due to the humidity factor increasing the “desensitization” process. THE SAME CAUTIONS APPLY TO A STEAM ROOM AS A SAUNA!