Cholinergic Urticaria has ruined my life

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I am a 28 year old male living in the UK with my parents. I weigh 70kg and am 186cm tall. I have been suffering with Cholinergic Urticaria for 9 months. I am in desperate need of help. 

Previous to developing this condition, I had no health issues whatsoever. 

I have been a competitive middle distance runner for the past 7 years, training every day. I have been heavily active all my life.

This condition materialised in the space of approximately 2 weeks. In that time I became entirely incapacitated in my ability to run.

As a result I visited my GP. A blood test revealed a slightly underactive Thyroid. This became the focus for my Doctor and my skin condition was ignored. Avoiding the immediate prescription of hormone replacement therapy, a repeat blood test was scheduled 2 months later to assess any change in the function of my Thyroid. Sure enough, and without any intervention, my TSH had come down significantly. Although not yet back in the 'normal range', I am schedule to have yet another blood test next month.

My doctor failed to acknowledge any relationship between an underactive Thyroid and Urticaria, and whenever the question was asked he became evasive.

My Urticaria worsened, it's affects no longer confined to when I ran but also when I walk, take a warm shower, lift something, feel stressed, anxious, if I'm in a warm building, when I sleep, when I'm in a car, if I trip. Almost everything I do is now affected, rendering whatever I am trying to do physically impossible. My outbreaks are not just itchy, they are excruciatingly painful. I often feel light headed and nauseous during an outbreak and have nearly passed out on occasion. I have to withdraw myself from whatever situation I may be in, in order to cool my body.

I worked for 6 years as an Account Executive, but last year decided to try something new. I have since lost my job as a Postman, having fallen short of the attendance standards required during probation. I started in January, and was fit work due to cooler weather conditions. In May, whilst on delivery, I was unable to continue. I was unable to work and after 15 days of sick I was dismissed.

Because of the warm summer weather I am extremely unlikely to find alternative work. The thought of sitting in an interview wearing a suit in this temperature causes me to itch. Driving my car is often not possible, nor safe, and I cannot wear anything more than running shorts and a loose fitting t-shirt. My aforementioned symptoms of Urticaria are simply not conducive with job searching/working. Despite having been in full time work since graduating, I cannot apply for Disability Benefit because I have too much money accrued in savings, most of which I had intended to use as a deposit on a house. I cannot apply for Job Seekers Allowance because I am unfit for work.

I was prescribed some Cetrizine, it did nothing. I was prescribed Cetrizine in conjunction with Monteluklast, it did nothing. I was reffered to the Dermatology unit at my local hospital. I provided a physical demonstration of my Urticaria and was prescribed Fexofenadine, it did nothing. I have since been placed on Fexofenadine 180mg, twice a day, and Propranalol 40mg, twice a day. Despite saying he has never seen such a severe case of Urticaria, the specialist doesn't want to see me again saying he has very little more to offer in the form of treatment options. 4 weeks on and despite feeling ill most of the time, these tablets are doing nothing.

I have scheduled an appointment in September with a separate Dermatologist in order to get a third opinion.

I am depressed. My life has stopped. I am now, as I am everyday, sat on my bed. Confined to living a solemn and sedentary existence. I feel lazy. I feel worthless. I cannot socialize for fear of suffering an outbreak in public. My fear is only further compounded by the thought of suffering an outbreak and being unable to affect it. The pain is shocking. I cannot imagine the toll this has already had on my health both mentally and physically; the physical pain of an outbreak seems an entirely unnatural and extreme stressor for my body to have to deal with on a daily basis. As is my transition from running 75+ miles per week, to doing nothing at all, alongside my rapidly deteriorating mindset. 

It's formally documented that this debilitating condition has a greater impact on ones quality of life than that of skin cancer, yet because it's not life threatening in itself it seems no one wants to know. Why is so little known about a disease with such devastating consequences?

I need help. I life like this is a life I do not want to lead and will not continue to lead if I do not witness a significant change in my circumstances. I've had enough and am now very suicidal.


12 likes, 237 replies

237 Replies

  • Posted

    I have one basic question for you. Were you taking any antihistamines before your first break out? 
    • Posted

      Hi Buffy, I've just developed Cholinergic Urticaria and I think it is because I was taking antihistamines.

      I was taking a type of antihistamine once a day for about 2 or 3 months and now I have stopped taking them I have developed Cholinergic Urticaria. I've been suffering for about 1 month now and the only time I don't is if I take an antihistamine before exercise. It seems to be getting worse and even being too warm in my house makes me break out.

      Can you tell me a bit more about your experience and how you overcame it?

    • Posted

      Hi Buffy,

      Mine started when i visited Luxembourg from Germany in December 2015. i noticed this after taking too much alcohol and break out at interval while drinking or exercising. Please what remedy can you recommend?

    • Posted

      Hi Buffy, I was taking antihistamines when I started getting hives. The doctor prescribed me prednisone but to continue antihistamines at the same time. The hives cleared up while taking prednisone but came back once stopped taking it. Please let me know what you did to get the hives to go away. Did you just stop taking your antihistamines?
  • Posted

    The reason I ask this is because of my experience with urticaria.  It's a lengthy story, but in the end I had what was called Urticarial Vasculitis. Urticarial Vasculitis can  be an autoimmune disorder, but can also be caused by medications. Mine was caused by a medication  which just so happened to be antihistamines. The allergist I was seeing just kept prescribing different types of antihistamines which never helped and only made it worse. Only when it was at its worst was I able to find relief by being prescribed Prednisone. I'd take this for a week or two and then once weaned off of it the urticaria would come right back. I think this happened because while taking the prednisone I was instructed to continue the antihistamines. 

    There are so many more little details to my story,  but I think you understand.  I learned so much in the year that I suffered from with urticaria that I hope maybe I can help you. 


    • Posted

      Hi Buffy,

      Thanks so much for taking the time to read about my plight.  

      Have you rectified your situation now? With Prednisone? 

      Thinking back yes, I was taking some off-the-shelf Benadryl for hayfever...


    • Posted

      Hi buffy,

      please can you send me some more details about the treatment that you followed and its effect?

    • Posted

      My hives/urticaria was caused by a medication, the antihistamines. My question for you is, were you taking any kind of medication before you started getting hives? 
    • Posted

      help me too please,, my story has been many years also but still going..
  • Posted

    Yes, I am all better.  Are you still taking antihistamines or similar?


    • Posted

      Fantastic, I'm very pleased for you.

      Yes I'm taking Fexofenadine 180mg. 

  • Posted

    Hmmm, do you get large red welts on your limbs or torso? They would be anywhere from 3" to 6" in diameter. They'd be red, hot, itchy and sore.
  • Posted

    I was hoping to share my urticaria pics but can't seem to get them posted. I was wondering if any looked similar to what you're experiencing.  If I can email them to you that would help. 
    • Posted

      I get hives - small red spots that appear in a matter of seconds when I'm hot, and disappear in minutes if I manage to effectively cool myself down. They appear on my back, chest, arms and wrists predominantly, but I also get accumulations on my ankles and inside thigh when at its most severe. The spots are very slightly raised, and about the size of a pin head, sometimes a little larger. Since taking fexofenadine and propranolol I have noticed that my itching can often occur without the presence of any hives, but with a greater intensity of pain. 

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