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
JJackson CU12
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BobbyJacob JJackson
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renni01775 JJackson
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I can totally understand your helplessness and frustration. You rightly said that only people who have the same condition can understand how badly we feel. People here say that you need to sweat out. That may be true as i never sweated much or smelt bad. I always felt so uncomfortable with people who smelt bad all the time but looks like they are better off. They say it has no cure so have to live with it but in all these years i have learnt to identify and manage my symptoms. Do read my post, i hope it may help you in identifying your triggers. Please try not to panic during attacks it really makes it worse. Try to be at peace with yourself and accept it as a regular condition. I am sure you would be able to manage your symptoms like i have.
BobbyJacob CU12
Posted
i too faced such issues . But after seeeing your commend that your doctor had examined your thyroid function test ,it clicked to me that i too had an untreated throid function where I ignored to take throxin where my TSH level was high even up to 90.
So I think thyroid function has an effect in this utricaria or some unexplaianable connection as the hormes has direct effect on the metabolism.
DOCTORS were little confused to say the reason.One doctor advised me to use EPI PEN.(adrenalin injection).
I took opinions from 4 doctors.One advised me to use fexofenadine 180 mg twice daily, and to take H2 RECEPTOR ANATGONIST too.ZANTAC..
BUT got confused and didnt wish to take medicines for long term..So I was trying various suggestions.
Some advised to find the blood allergy test to find which substance might be trigerring the issue.
Though I was not satified with the doctor's opinion I got some ideas by meeting different doctors though they were reluctant to see me again with the same issue..
The allergic test was showing that there was an allergy to Canned food where I had tinned tuna cutlet four or five pieces on the eve of the attack.TYRAMINES in tinned food are high histamine releasing substances.
SO I AM AVOINDING PROTIEN RICH FOODS, MILK which caused extreme hives in my body which resulted even to anaphylactic tendancies.So I switched to green tea instead .
I AM now 40 years, but I didnt allow to go to depression though I was a weaker personality.Instaed I confess all the favour that I can receive From God that I will be healthy to the best of which can.
So confessing positive faith irrespective of the situation help us to stay calm and positive imagining that God Plans for the good of the one who seeks Him,
Then finally I turned to homeopathic treatment which is proving its level best.So less side effects .Therefore i SUGGEST HOMEOPATHIC TREATMENTS, AND CONFESSING POSITIVE HOPE , they give us emergency helping aid chewable medicines which reduces much tentions when a break out appears.
AS I STOPPED milk products, wheat related, gluten related, so less reactions....STAY POSITIVE AND HAVE AN ALLERGIC TEST.
REGARDS
BOBBY
BobbyJacob CU12
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I had hives from Banana too .. so i avoided it.But I pray and say in prayer that I confesss miracles that i will be alright soon .................
cashew nuts too I avoided... these were all my favourite food...
dee926 CU12
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Are you still having this problem. Are you taking any cholesterol medicaton.
john04187 CU12
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ann09075 john04187
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Methotrexate helped me because my hives are autoimmune related. Then i was also given plaquenil as a maintence drug. Check with a doctor that is a rheumatologist and allergist in case other medicines don't work. prior to learning that I had an autoimmune disease, I did use xolair which worked well during one episode. It did not work for me the following episode, which had baffled all the doctors.
Fyi....my mom has rheumatoid arthritis and my dad had diabetes, so the autoimmune disease manifested in me in the shape of hives. They say autoimmune diseases can be genetic, but often they change from one generation to the next.
I wish you the best in your journey!
john04187 ann09075
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ann09075 john04187
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I think your best first step is to find a rheumatologist /allergist that understands your situation and can determine if your issues are caused by an autoimmune disease. I saw an allergist for 15 years and then to a dermatologist and i was misdiagnosed or not diagnosed. I was on A LOT of medicines which made me sicker and my hives would only go away with prednisone prednisone only masks the hives but they are still there.
If you go to a GP, they won't know what to do with you. Allergist and dermatologists may not know or won't be comfortable prescribing these types of medicines because they are usually very specific for autoimmune diseases. My mom who has rheumatoid arthritis is on methotrexate for her symptoms. However her rheumatologist will not see me because he does not treat people with hives. My current doctor is Julie Patel in Houston's medical center and she is both an allergist and rheumatologist.
Fyi...I am a femaile, 44 years old and I started breaking out when I was about 27. Stress would definitely make it worse so my doctors would blame stress. But it was more.
Let me know how if this helps. I sincerely wish you the best!!!
john04187 ann09075
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ann09075 john04187
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john04187 ann09075
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ann09075 john04187
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I have been in your shoes so I understand your frustration. You can beat this and you are too young to give up. Please keep me posted.
Take care!!!
BobbyJacob john04187
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1. Please check your thyroxin level
2. Please have a test for allergy and find out which food or substance is the main reason for this hives
3. Personally also check which food u had consumed immediately before the breakouts .
If you avoid the food that gives allergy , and if u treat the thyroxin if beyond normal level then to am extend you can live with out fear .
4. I'm depending on homeo medicines that helps a lot and less side effects .
They have emergency help tablets also that will start working immediately if we use it when a symptom appear . It is non steroidal too.
BobbyJacob
Posted
I was even in fear , what would I do , if I'm driving in highways where I can't stop immediately .
Tuna was detected as an allergen in my blood test . I had been eating since my childhood and no reactions flared up till that time . If thyroxin level is beyond normal I mean TSH hormone , then it can't control the digestion of some food as thyroid is connected with our metabolism .
So friends , if available , try these methods . Dependable . And always say a prayer before you start your day . " I am expecting a miraculous health in my body " I'm sure God is helping me . " I'm healed and thank you Lord for that " keep saying it in mind every now and then .. We will definitely get a positive mind and positive result of well being . All the best .