Cholinergic Urticaria has ruined my life

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Hello.

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

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  • Posted

    Hi I am in the same situation as you with slight difference I have suffered with this for over 20 years I am a single mum and only 42 it is a horrible condition to live with and I am up to 88 tablets a week and still break out I also here osteoarthritis on top please do not be suicidal I know it's hard I get so fed up with not being able to take my kids out in summer I am now fighting to keep disability money as they said I can work they should try living in.our shoes need to chat just send a reply be glad to help if I can

    • Posted

      That sounds terrible, I struggled a lot and I was a Dad with my wife doing most of the childcare hard work. Try to see an immunologist and ask about Cyclosporine maybe? It's used for Hives and Rheumatoid Arthritis so maybe that would work well for you. If that makes you ill, I've been feeling ok since starting Mycophenolate Mofetil so far (only 2 weeks in). I'd fight back hard. If you are in the UK, use all the NHS resources you are entitled to, to try to get better. If you are very depressed and _almost_ suicidal, get referred for that. You can also use that to fight back against the disability money you are rightly entitled to. Find someone kind and tough who can advocate for you, a doctor or whatever. And don't take no for an answer. People have no idea the suffering (mental and physical) that we go through before coming out the other end of this nasty condition. If it helps any, I'm starting to feel I'm in remission after Cyclosporine and also seeking help from therapists, taking up mediation etc... to deal with the mental suffering that followed in the wake of chronic  urticaria. If it is severe spontaneous urticaria, you may be entitled to Xolair. That might knock the physical problem down. But in my experience, even after you start to get the better of this, there's still a bit of emotional damage to deal with in the aftermath.

  • Posted

    Please respond to my inbox with your email. Our stories are identicle, and your hives and reactions are the same as mine. Would love to ask you further questions.
  • Posted

    Hello, 

    I know it's been a year, but I stumbled across it just now. I really hope things have improved since then, but if not, then bare the following in mind.

    I have really bad Urticaria too, and I am lucky to have been referred to Immunology at Heartlands hospital, in Birmingham. Ask your doctor for a referral. The team really work hard, are friendly, and seem to know what they're doing smile

    Best wishes

    • Posted

      Hiya, I've been told that my immune system is fighting itself but still only offered steroid cream and now starting uv but surely they only treat the symptoms. What are the immunologists doing for you?

  • Posted

    Hello

    I feel your desperation and frustration with your condition.

    I googled urticaria and suicide as this is what my urticaria has led me to and your blurb came up.

    I too am plagued with urticaria and am getting to the end with how I should cope. NO DR takes me seriously. I have scratched myself to where I bleed and yet my dermatologist just gave me certrizine a Clartyne and said if it's no good in two months come back. I've had this for 8 months and am desperate. I wake at 3. AM everyday and then it s a struggle to get to 8 pm at night when I can take a sleeping tablet to sleep.

    Don't know what tn I'm typing to you as I have no hope or optimism to give you but though I'd write anyway.

    Take

    Tracey

    • Posted

      Hi Tracey,

      Read the post that I just replied to CU12, it might come in handy for you. Ask your GP to refer you to a dermatologist (as many GP's have no clue about cholinergic urticaria), and then ask to be prescribed with 200mg of Danazol. It helped my fiance who gets attacks as severe as yours. It keeps the attacks at bay for a few months. The attacks do come back eventually but they go once he takes them tablets. It's not a permanent solution, but has definitely improved his quality of life for now. He has been on and off Danazol for a year, and I have seen a massive difference. 

      Please give it a go, and don't give up. Don't let this awful condition win.

    • Posted

      Hi

      Thank you so much for your help. I am going to the dr tomorrow and will ask about danazol. I would try anything at this stage.

      Thankyou again for taking the time to write.

      Kind regards

      Tracey

  • Posted

    Hi CU12,

    I really do hope that you have found a solution by now. My fiance is currently going through the exact same thing as you, and it is truly awful. He is experiencing the severe attacks which makes him feel like he is about to pass out, and he cannot go out because he is afraid of getting an attack. It has affected his quality of life for sure.

    I wanted to know if you have found a solution? His GP referred him to a dermatology specialist, and he prescribed him with Danazol 200mg tablets which massively helps him. So maybe you could try and see if it works for you? It seems to be the only thing that works for him, although it is only short term.

    He is looking for a permanent solution, but this does help in the mean time. I agree with you, definitely not enough research has been put into this horrible condition. Please let me know if you have found something that works for you.

    I really do hope that things are better for you, and that you are no longer suicidal. I know cholinergic urticaria is an unbearable condition, but don't let it take your life. It will be beaten.

    Take care

     

    • Posted

      The immunosuppressants Ciclosporin and Mycophenolate Mofetil (MMF)  both calmed my hives and itching right down. Ciclosporin seemed to have the effect of reducing it, even after I stopped it. Ciclosporin made me pretty damn sick (persistent nausea and dead tiredess). But some people are fine on it. Mycophenolate was much easier to tolerate. On 2 grams a day, I noticed myself picking up lots of little infections, then eventually getting a viral or bacterial infection I just couldn't get over. So I've stopped it, as I'm not sure I need it anymore after the Ciclosporin. Gabapentin has helped a lot with the itching, insomnia and anxiety with this for me too. It's good if Danazol helps in the short-term, but I'd get off steroids onto Xolair or immunosuppresants as soon as possible to avoid potentially nasty steroid side-effects.

  • Posted

    Okay. Let me get one thing straight. I have been suffering uticaria(I am going to call this ut) for about three years. But i have only a few not so serious symptoms, but i scratch constatnly and honestly my neck has been wrecked with dryskin. I understand how u feel. I have felt suicidal thoughts too, since i was constatnly self aware of my physical feature.

    Just keep on moving. Dont let Ut suppress you. Being angry and sad never helps. 

    • Posted

      Hi

      Thank you so much for your kind words. I am lucky enough to have had a good reprieve in symptoms so am feeling a lot better.

      Thanks again

      Tracey

  • Posted

    Hi. So sorry to hear you are suffering as well. Prior to the chronic hives I had no health issues and stayed very active. They came out of nowhere. I had a bout of chronic hives four months ago. The whole deal, angiedema and all. After 4 months, they tested me for Epstein barr and it came back positive. Antihistamines helped some during the day but gave no relief at night, I always woke up covered in hives also. 

    Eventually two months after the diagnosis, they stopped just as strangely as they started. About three weeks ago, I woke to find more hives, and they haven't stopped since. It's beyond frustrating thinking about having to go through it again. They tested for mono virus again, but it came back negative. So were at square one. 

    I will ask the doctor if they can test me for a Helebactor Pylori stomach infection. I've heard co-infections with that and mono are often a cause of hives. Let me know if anything has helped you. I'm desperate to find answers faster this time, as you know how debilatating it can be. 

    -Tara

  • Posted

    I'm so happy to find this group. I am crying my eyes out, just to know I'm not alone. It literally causes my eyes to swell, swells my lips, The bottom of my feet, hives all over my body. PAINFUL, HOT, ITCHY WELTS. Sometimes I want out of this life. The weight gain just maximizes my depression. I'm so glad I found this group.

  • Posted

    I am suffering from the same condition, I cannot carry on living like this. I am so suicidial and wish all of this could end. Please help me :-(

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