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
geo17164 CU12
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He says have you tried allegra,,
helen14499 geo17164
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daniela_36294 geo17164
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deanna-mar85318 CU12
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I have been living with this for over four years now and have also found it hard to participate in activities and be outside or take warm shower and exercise. You can ask you doctor about steroids to help but they won't last long, about a couple of weeks. All you can do is find jobs that are indoors and have air conditioning and allow you to wear loose fitting cool clothing. The only thing you can do is cope with it since there isn't treatment for it.
The best of luck to you.
kate35021 CU12
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randy18687 CU12
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katherine08199 CU12
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I developed chronic cold urticaria in my early 20s and put up with if for nearly twenty years seeing many specialits on the way - until I was diagnosed Coeliac. It disappeared completely once I was on a gluten free diet. I have not had it for 20 years though I have since developed other autoimmune diseases, underactive thyroid and arthritis.
However, recently I started to follow the Paleo diet and it has come back with a vengeance. I researched and now discovered that Histamine Intolerance may be the cause as I was suddenly eating foods very high in Histamine.
So I am now on the journey again of finding how I can releive this chronic condition through eating the right foods. I do believe it is linked to automminune disease and following a diet low in Histamine and inflammatory foods may be the answer. (Instead of medicating the problem)
It is not easy but I do believe the food we eat is our medicine. If I find the answer I will let you know.
Good luck
Katherine
armaan28284 CU12
Posted
Confounding variables: I have stopped taking antihistamines (mostly), as they proved to be of little value to me while (avoid H1 antihistamines, I hear they're useless for cholinergic urticaria patients, although they may have helped slightly. An often prescribed H1 is fenaxofenadine. You can use H3 like zyrtec, although my experience is limited with it). Some people are saying antihistamines can be contraindicated (perhaps a cause of these reactions). I do not know.
I have been happily on a vegan diet for the past month (after being vegetarian for 8 months.) This may have helped with my cholinergic urticaria (by decreasing allergens such as dairy, which are known inflammatories, and unknowingly decreasting high level histamine foods).
I am in college. Although a different lifestyle, cholinergic urticaria followed and developed (after the initail reaction) in India to become full-blown.
WARNING:
I have heard remission rates for cholinergic urticaria (and subsequent returns) occur quite quickly. My first attack was on May 5th, 2013.
I will eventually create a post documenting my experience. If you have ANY questions, please contact me.
tonello26977 armaan28284
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daniela_36294 CU12
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I just saw your post. I was diagnost with solar and heat urticaria 4 years ago. I can certainly anderstand your anxiety and frustration.
Have you tried Xolair??
I just found 2 weeks ago a Dr. Allergist that advised me to take it. It is a new biological drag approved on 2014 by the FDA. It has been used mainly for asma but has had good success with physical urticaria.
I have an appointment on Tuesday with the allergologist and if everything is OK I will begin the treatment next week. The treatment consist of a shut every month .
Look it up in Internet
Let me know how are you doing?
I think Xolair is a new good thing
helen14499 daniela_36294
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daniela_36294 helen14499
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I hope Xolair will help me and I can finally have a normal life again
Good luck to you!!!
helen14499 daniela_36294
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wendy62425 helen14499
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i just wanted to let you know that I had a problem with taking the Dapsone. Although it kept the hives away it started to break down my red blood cells. Ask your doctor to check your blood after you have been on it for a couple to few weeks......this does not happen to everyone....just wanted to let you know what happened to me. The doctors put me on Prednisone to build up my cells...they are back to normal and I'm finishing tappering off.....I pray the hives don't return as they have in the past.....but I've been on it for a much longer time.
i wish you the best!
Wendy
helen14499 wendy62425
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wendy62425 helen14499
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Yes please let me know how you are doing. Are you in the UK? I am eating less carbs and drinking more water. Ask your doctor to check your Vitamin D......if low take Vitamin D.....it's suppose to help with Urticaria.
Have a nice day!
Best
Wendy
daniela_36294 wendy62425
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I live in Ecuador now. Yes, I was tested for vitamin D.
All my blood test are OK.
helen14499 wendy62425
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wendy62425 helen14499
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If you tested positive for helibactor pylori......that's why you are getting hives....how are they medicating you......with Dapsone? Do they treat that with antibiotics? If your doctor isn't able to help you.....get a second opinion from another. Are you breaking out in the hives daily?
Hang in there girl. keep me posted!
Blessings,
wendy
helen14499 wendy62425
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wendy62425 helen14499
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How are you doing? Did you get any feedback from Dopekeed? If so please share. After stopping the Dapsone and long time on Prednisone....the blessing is that I am still hive free. A few days after I stopped the Prednisone I had a few pressure hives but treated them with Allegra....so I am just taking one of those a day. Unfortunately a UTI came about so I have been on antibiotic so I pray that doesn't bring them on. Months ago Allegra and so many other meds couldn't keep them away. I hope all is going well with you...please let me know how you are doing.
Take good care
Wendy
helen14499 wendy62425
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helen14499 wendy62425
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wendy62425 helen14499
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thank you for posting..let me know how your blood results came out. I hope all goes well for you! So far many Blessings as I am still hive free..I pray it continues. Have a great day!
Wendy