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,
Locks
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.
Other notes:
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!
Marcia Hildreth McGrath says
Your situation sounds quite typical for CU. Many have done what you are doing; exercise to the point of sweating, sauna, medications, etc. Have you modified your diet in any way? Many find that they are sensitive to certain foods. My 32 year old son with CU has found that if he avoids sugar his symptoms greatly improve. This has been his best winter yet. He has also let up on drinking caffeine, and he is also a vegetarian. The combination of those things seems to work well for him. You may want to experiment with your diet to see if you get some relief that way.
The best to you as you continue on this journey. God bless.
Locks says
I have not attempted to modify my diet as of yet. I will have to attempt that. I don’t consume alcohol or much caffeine as is. I hope your son is doing well with his CU.
John says
For the last six months I’ve only eaten about 20% of the grains I used to eat and feel a lot better. Just not as intense as they used to be. Also I keep a cold pad in the freezer for instant relief. Place one of these on a rash for two minutes and it’s gone.
Locks says
It seems that diet is a major factor with a lot of people’s experiences with CU. I’ll have to keep a food diary and reintroduce foods and see what changes happen. I wish you the best with your CU management.
John says
Not to go off on a tangent regarding your situation, however, I thought it would be easiest to ask a simple question here. I self diagnosed myself with CU and although possessing majority of the symptoms associating with CU, there are no visible hives or wheals visible on my body. Is this possible? Thanks for any quick answers.
Locks says
Yes, it is possible to have the symptoms without the visible wheals/hives. I would suggest going to see your doctor with your symptoms and the history to rule out other conditions and confirm the diagnosis of CU. A dermatologist would be good to see.
Anonymous says
Sauna and prednisone works best for me. Benadryl also
Locks says
Good that you found something that works for you. Different things work for different people.
kimmy says
Have you lived in different country short period to try out if trigger is local water ? My husband’s trigger is local water.. I believe that something inside water trigger or too high level of PH level…
Locks says
I lived in the UK for 18 years and then America for 6 years and back in the UK since 2016. I drink tap water mainly and haven’t found any issues with it. However, everyone is different. Adapt the water types consumed (bottled vs tap) and check the pH level and track the effects. Hopefully that may help narrow it down. I wish you and your husband the best.
Sachiko says
It’s good to hear from a fellow UK person and hear their story. For anyone on this forum, hives has probably drastically affected the course of their lives – their ability to take certain jobs, meet people and have the energy to have a fulfilling life. It’s always nice to be reminded that so many others are experiencing the same frustrations. I have cold induced hives, and am very close to managing my symptoms completely. Many factors seem to cause my hives so it has been a long journey (12 years – i am now 31) However, I have gone from being in very poor health and taking antihistamine daily to not taking any medication in 6 months and experiencing very low level itching about once a week. I have had to remove all perfumes from my environment (including washing detergent etc) and do not eat wheat, dairy, eggs, fish or refined sugar. I have realised I am also allergic to fur so cannot stroke animals. Being vigilant with the above removed the majority of my symptoms. The final piece was taking vitamin D supplements (4000 IU per day) even though I blood test showed I was in the normal range. I hope this information can help someone.