Cholinergic Urticaria has ruined my life
Posted , 137 users are following.
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
UC_Sufferer_UK CU12
Posted
Before this episode i was a very active IT/Network Engineer and loved my job. I can not currently work, have found it very difficult to get any disability benefit, because they say that despite my constant rashes, i am physically capable of doing everything that they ask. This is so untrue!!! they simply do not understand that in order to do all of the activites that decide if i am incapacitated or have a lack of mobility, i have to be able to dress to do them!!! Sighs.. ok.. off my soap box now.
CU12, please, if you do nothing else, go to your doctor, contact them, whatever you have to do and insist you be sent to an immunologist. Dermatologists alone cannot help you. Urticaria in any form (and there are many) is an immunological condition, even though it presents on the skin. It is caused by the histamine producing cells producing too much histamine and you body then reacting to that histamine production. Yes stress can make this worse, i know it is one of my triggers, and being trapped in my home feeling unproductive and closed off from society isnt helping.
There are many things an innumologist can do for you, and they have access to so many other therapies too. I have tried so many combination therapies over the last 2.5 years, and unfortunately for me, none of the 20 or more have worked so far. I hope that once you get to see a clinical immunologist that they can find something that can work for you.
I am currently taking montelukast, amytriptiline (75mg) this helps with the constant itching and feeling of my skin crawling, high dose calcium (im vitamin D deficient) and loratidine 4 times a day. this is the lowest number of meds i have taken in a day, at one point i was 38 tablets a day (combination of 10 or more drugs to try and help the urticaria).
I know how disheartening it is to keep trying different things, i just hope that you have a sympathetic and helpful immunologist when you eventually get one.
Good luck.. i hope they find something that helps you!
desmond01416 UC_Sufferer_UK
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dopekeed CU12
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helen14499 dopekeed
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armaan28284 dopekeed
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katherine08199 dopekeed
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Gall_Cohen dopekeed
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mariapham89 dopekeed
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i was wondering if you can please tell me what you did in order to treat your CU?
Many thanks in advace !
Maria
B.Moretti CU12
Posted
I've been suffering from this or a form of this for years now, not knowing what it really was until a couple of years ago. A doctor i visit told me it was an allergic reaction, and that there is no cure but to treat it when it shows up. He gave me a shot (steroids) which effectively gets rid of the symptoms for about a month, after that they slowly start creeping back until i get full blown attacks again. (The bad part about this treatment and why i stopped using it, is that it brings the immune system so low, that i start getting sick with bad colds all the time).
Now, my question is, what type of urticaria do i have? I get the exact same symptoms except for the hives. I don't know if i'm lucky or not cause i don't get the hives, but i do get the itches which are really bad, and usually the worst lasts around 15 to 20 minutes. I can't get agitated at all because i get it right away, any form of situation which is too hot or emotional stress triggers it right away also.
Reading this section i now know that my condition is not as bad as others have, but still it is something terrible to live with. I love to exercise and i know every time i start it's a matter of time before the attack happens.
UC_Sufferer_UK B.Moretti
Posted
As for your condition not being as bad as others, it doesnt matter how bad it is, all that matters is how much it affects YOUR life. I can empathise over the exercise, i cant and havent been able to for a long time.
I hope that they can help you.
B.Moretti UC_Sufferer_UK
Posted
As you said, a dermatologist did not help very much, the ones i saw pretty much have no idea what the condtion is. I will take your advice and see an immunologist.
Since pretty much every doctor i've asked about this doesn't know what it is or how to treat it, i googled "body temperature allergy" and stumbled upon here. I'm glad i now know what it is, or at least what it might be, since i don't get hives at all but my body does feel like it's burning up in the situations i've described.
And you're right, what matters is how it affects my life. I feel for anybody suffering this or any form of this, it really does suck.
helen14499 UC_Sufferer_UK
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desmond01416 helen14499
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desmond01416 CU12
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It's worth mentioning that I found working with a good open minded GP who is willing to work with me in researching ways of treating this better than working with an inexperienced closed minded immunologist. The latter took the attitude that they know what they are doing with this condition but the truth is that they know almost nothing about urticaria and pruritus, unfortunately for us. Luckily other medications for unrelated conditions like depression actually seem to be very useful in down-modulating hives and itch. If SSRIs are no use I might see a better immunologist privately.
Finally, topically I've been finding menthol cream works better than capsaicin to reduce urticaria itch.
Quality CU12
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