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

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  • Posted

    Read "Quercetin" reviews on Amazon. This flavonid is a very powerful antihistamine and nothing short of amazing.  
  • Posted

    If Western medicine has no answers,look inot Eastern.

    The TCM names of urticaria include, wind rash (feng zhen), wind itch concealed rash (feng sao yin zhen), and wind rash lumps (feng zhen kuai)

    Signs and Symptoms

    Pale or red wheals appear suddenly on the skin and are caused by vascular dilatation and edema, with an itching or burning sensation. The lesions may remain small (1-5mm) or enlarge to as much as 10cm or more across. Crops of skin lesions come and go, with a lesion remaining in one site for several hours, and then disappearing within 24 hours.

    Acute urticaria is self-limiting and typically subsides in several days to 2 weeks. Chronic urticaria recurrently attacks for more than 6 weeks.

    Traditional Chinese Medicine Etiology

    Wind is the main pathogen in urticaria.

    • Wind-cold or wind-heat invades the body, which results in a disharmony between nutritive and defensive qi

    • Damp-heat accumulates in the stomach and intestines, due to an irregular diet or intestinal parasites.

    • A congenital defect with qi and blood deficiency results in wind and defensive qi deficiency.

    • Mental irritation, disharmony of the Chong and Ren, or liver and kidney deficiency can not nourish skin, generating wind and dryness.

    Differentiation and Treatment

    1. Wind-cold

    White colored wheals appear and they are aggravated by cold and wind and alleviated by warmth, and occur most frequently in the winter. There is no thirst and the tongue is pale with a thin white coating, and the pulse is floating.

    Treatment principle: Disperse wind and cold, harmonize nutritive Qi and defensive Qi

    2. Wind-heat

    Red colored wheals appear and are aggravated by heat and alleviated by cold. The temperature of the lesions is higher than that of the normal skin, and the lesions occur most frequently in the summer. There is also restlessness and thirst. The tongue is red with a thin yellow coating, and the pulse is floating and rapid.

    Treatment principle: Disperse wind, clear heat, and stop itching

    3. Damp-heat in stomach and intestine

    Red colored wheals appear with an irregular diet, accompanied with abdominal pain, nausea, vomiting, and dry or loose stools. The tongue is red with a yellow and greasy coating and the pulse is slippery or rapid. Some cases have intestinal parasites

    Treatment principle: Clear intestines and transform dampness, disperse wind and stop itching

  • Posted

    I have finally found a treatment for this condition after suffering for years and feeling like there was no hope. I started to go to saunas just to sweat it out, but thinking about having to do that for the rest of my life was not the best option. I finally had an allergist who didn't give up on me. We tried all the OTC allergy medications (e.g. Allegra, Claritin, Zyrtec) and even up the medication -- no results. He finally had me try a prescription strength Zyrtec which is the 3rd generation and is called Levocetirizine. 1 Pill a day (except the summer cause I don't get this condition in the summer) and it's working. I get about a 95% - 100% reduction depending on the day and severity of the attack. I'm trying to post this same message on several forums in hopes of helping people out. I know I scoured the web in search for an answer before I found mine so hopefully my posts will help others. Good luck!
    • Posted

      Hi thanks for you input. So would you say heat helps and or sunlight?
    • Posted

      I started taking zrytec years ago 10 mg it helped some but my hives always came back..didnt know zyrtec had stronger,,almost daily welts on my face,,theres no life..
  • Posted

    Hi what a very informative thread! My urticaria developed after having allergic reactions to medications - Mirtazipine anti depressant) & then Pregabalin (off label use for anxiety disorder & trapped nerve pain relief). The rash hasn't gone away from December. It seems to come & go. I can't wear Viscose trousers, that flares it up badly! I find that my skin is dry on the whole & itchy but the rash is mainly down my legs. I seem to hold all my toxins in my legs! I've been taking certirazine x2 a days on the advise of my GP but I feel reluctant to take any medication now. (Been taking this for years for hayfever anyway) I had flu a couple of weeks before the Mirtazipine so I'm wondering if that virus affected my cells. I read someonewhere that viruses cause genetic mutations...SCARY! 

    I remember having hives on my upper arms as a teenager when I messed around with my diet (unspecified eating disroder) & did binge drinking etc. Back then I've never heard of urticaria & someone said they are "liver spots" so I assumed my liver wasnt functioning properly. I then went Vegan for a while but got ill from lack of vitamin B12. 

    Now I'm using "Eurax" - Crotmiton solution, which cools down the itching for a bit & moisturises my legs nicely. Other than that with Cirtiraine, I'm trying to cut out processed foods, alcohol, caffine & eat more raw veges. 

    Has anyone tried sund bed sessions? I know heat is a trigger, It's painful having a shower, but I read on a link here about phototherapy...

     

  • Posted

    Did you figure out what might be causing your hives. I am allergic to a chemical. It is called Methylisothiazolinone. You might google it. Many many people are allergic to this. It is in laundry soap, shampoo, dish soap, dishwasher soap.. ALMOST Everything! 
    • Posted

      Hi have you found any alternative products without it in?
    • Posted

      Yes. I use ALL free and clear for laundry soap and many products from Ecover... Stain stick, dishwashing liquid and dishwasher detergent.

      I think the laundry soap made the biggest change. You have to change everything and be prepared for the changes to take a couple months before you see they are workings.

    • Posted

      Thanks. I've not heard of all free, just searched for it & perhaps it's not available in the UK. We do have Ecover. I'm goin to try Salcura products too. I've been using some for years & they seem to be a good  brand. 
  • Posted

     Hello CU12,

    Don't despair...and if you are really feeling suicidal, you must tell someone and go to see a public health nurse or a psychologist or psychiatrist urgently. Your post was written 8 months ago. Did you find a solution in the meantime. I suffered for years with urticaria so I understand. If you can clear this up in short order, you will have suffered for far less time than I did.

    Hives can drive a person man...but there is a cure...and I found it, thank God! Here is my story:

    About 15 years ago, for about 5 years, I had chronic hives. I didn't have them every day; they came in waves..unexpectedly. If I was hot or in areas where my skin was under a belt or waistband etc.. I couldn't scratch in public so it was nothing short of torment!  It bcame so debilitating that I decided to get to the bottom of it. I saw 2 dermatologists and 1 allergist. I was put on anti-histamines and an anti-itch medication, both of which made me so drowsy during the day...and depressed! I was told by all 3 specialists that no one knows why these rashes appear. They said basically that I may have it for life or it may spontaneously disappear; not encouraging news... After several months of feeling horrible due to the medication's side effects, I visited a very popular naturopathic shop owner in my city (who happens to be a licensed pharmacist). He told me one thing: STOP all carbs. He didn't even sell me any magic potion. He said, "No bread, no cereals, no potatoes, no pasta, no fruit...and of course nothing sweet like juices, desserts, flavoured yoghurts, fizzy drinks etc.. Believe me, I was very motivated and willing to try just about anything. He told me that CARBS CAUSE INFLAMMATION and that any time a person has any kind of inflammation in the body (mine was the rashes on my skin), to stop ingesting carbs. I was doubtful it would work but keen to try out this' diet'...which was actually very healthy.  It was basically on an Atkins diet; eggs, cheese, bacon, meats, fish, seafood, tofu and as many vegetables including salads as I liked with (sugar free) dressings and plenty of water.

    After 2 days I decided to reduce the pills...no rash.... and on day 3 cut them out entirely. I waited for the hives to return...but they didn't! I continued on the diet and in 6 weeks I lost 13 pounds without trying...AND my hives were GONE! Twice I tried a few bites of toast and the rash started up again. It was only after about 8 weeks that my inflammatory state calmed down enough that I was able to slowly re-introduce carbs. 

    Three doctors were unable to help me...but my naturopathic / pharmacist practitioner was with instead of drugs, a lifestyle change. And it was so simple! What I learned from that experience is to listen to my body and to eat what is good for me and to rely on my own judgement and common sense.   Doctors tend to reach for the prescription pad when there are LIFESTYLE alternatives.

    Let me know how you are doing, CU12 and if you cut carbs and are now cured.

    Robin

    Montreal

  • Posted

    Wow Robin, that sounds good, I'll try it straight away.  Mine is back, even after taking all of the anti histimine that I was given and are still taking, the common factor for me seems to be stress but it still moves around then disappears, sitting here it's worse than ever so I will try this.

    i went to see yet another doctor last week who showed me the first stages in meditation, which was simply the breathing exercises to reduce stress, this is also worth a shot as is anything to rid of these hideous irritating hives

     

  • Posted

    Dear,

    Kindly ready this article you will found treatment in this which will help you.

    http://onlinelibrary.wiley.com/doi/10.1111/j.1398-9995.2007.01591.x/full

    • Posted

      thank you for the article,,but the doctors here where i live dont have a clue about this..
    • Posted

      Hi

      Than you for the link!

      Yes my doctor just prescribe that drug to me. The commercial name is now called XOLAIR

    • Posted

      Hi

      Than you for the link!

      Yes my doctor just prescribe that drug to me. The commercial name is now called XOLAIR

      _ 0 F g < reply>

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