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
sandra_55263 CU12
Posted
Your condition is chronic and you might benifit from treatment with a medication called Xolair (omalizumab) an injectable given every 4 weeks. Speak to your dermatologist or allergist about this it works in about 60% of patients not a cure as required to take it every 4 weeks.
Also cholinergic urticaria is known to remit
Hopefully the injectable will be available to you GOOD LUCK
sheila62513 CU12
Posted
People get cross and say 'I know it's not in my head' but the truth is our brains keep us well and make us ill. The way you think, the food you eat and all your surroundings are beneficial or detrimental and it is a fact that you have suddenly become hyper-sensitive.
When it comes to cetrizine I feel less is more. One at night and don't overload. If you take more it just makes you lightheaded, hence the evening dose.
Look at making sure your gut is healthy. Dose up with Kefir each morning.
Fingers crossed mine has calmed down at the moment and am avoiding stressful situations. (Running a pub? Yeah, ok!)
Hope I may have helped.
TDRob CU12
Posted
Sorry for the novel, but I feel like this is the right place to share this story. It's kinda traumatising when you're lying on the side of the street on the grass and freezing because you can't physically walk without collapsing. I'm still really scared of this and worried it might have killed me if I hadn't had my cellphone to call the ambulance, because everyone was just driving past me like I was just some drunkard on the street. But if anyone is interested, I can follow up at a later date, just get at me. Peace everyone.
BobbyJacob TDRob
Posted
some suggested baking soda sounds good...
Nico.Segura.T CU12
Posted
I have been suffering from this condition for the past 6 years since I turned 17 so I felt very identifies with the feelings of desperation and frustration in your post. I am very sorry you have had to suffer from this horrible condition that also has threatened my daily life and made it impossible to go through the most "normal" situations.
I want to tell you something. I have to walk every morning to go to uni for about 20 minutes and by the time I get there I just want to scream from the climax that my skin is going through. I have tried EVERYTHING and only been left with frustration.
The other day I had an idea. I thought: "what if instead of having this episode at uni, I could have it at home and at least know that I will suffer it at the confort of my own place?"
With this in mind, I woke up one morning and started doing push-ups in my own room to self-induce an episode. After a few sets, the attack was triggered and I suffered it as per usual. Then I had a shower and went to uni, and it was the first time in MONTHS that I did NOT have an attack.
It's been two weeks now, and I do a few sets of push-ups every morning to the point I sweat for about 20 minutes, then have a shower (warm and all) and go to class and since then I have NOT had a single episode occur.
I know it is a long shot, but please try it. Do a few sets every MORNING before the start of the day, make sure you sweat. The fist days will be the worst cause you WILL suffer the attack but you will see AMAZING results after a week or so. PLEASE TRY it, I thought of you after I had this idea and it has worked better than anything else in YEARS.
Hope you see this message, please let me know how it goes, I look forward to hear from you, all the best, we can overcome this !!
desmond01416 Nico.Segura.T
Posted
joanne12001 CU12
Posted
wendy62425 joanne12001
Posted
Please ask your doctor for XOLAIR injections! I have tried so many medications that stopped working and quality of life was terrible with much suffering having to go to the ER. My Allergist/immunologist doctor told me about XOLAIR so I tried it as honestly, I had no other choice as I was miserable. The evening of the second day after my first shot the hives went away and I was able to sleep for the first time in two weeks. It is monthly injections and is truly a huge Blessing......I have my life back! The insurance covers it as it is the only thing that works...your doctor will have to deal with your insurance for you plus there is additional help. I live in the United States in Virginia. Xolair is used for Asthma but was found to work great for Chronic Urticaria. Please for relief......ask your doctor! If you have any questions please let me know. Take Care Joanne...keep me posted.
Best,
Wendy
joanne12001 wendy62425
Posted
we use the NHS which is a free service so I will ask my gp at the hospital as I have been referred back to the allergist at the hospital I will also read up on it. I'll keep you posted. Xx
wendy62425 joanne12001
Posted
i hope this will help you...I look forward to hearing what your Allergist says about Xolair for you! It's one injection every 4 weeks...some are once every 6 weeks. I wish you well! I pray someone finds a cure for this soon. keep me posted.
Take care
Wendy
re08763 joanne12001
Posted
Check your diet, digestive system issues lead to this condition. Watch what you eat - reduce consumption of meat products, try vegeterian diet, avoid milk by all means(milk is for calf to drink and grow quickly-not intended for humans). You an have fish.
sit in sauna and do work outs so that you sweat every day.. If these things are difficult, move to warmer climates -tropical better.
melanie38626 CU12
Posted
.....anyone?
rimm27400 CU12
Posted
mark48228 CU12
Posted
I did read somewhere that the skin starts itching when it cant sweat and its my body producing hitsamine reacting to the start of sweating , but If it was this when why does it stop around spring time and start again around end of august/ beginning of september - its not as though in the UK the weather completely changes, can have really hot days in sept and cold days in June here.
I havent bothered to go to the docs as I cant see what they will do, other than say its dry skin and take antihistomines, but taking antihistomines, for more than a couple of days makes me tired, moody and not good at all, and little point taking them as I can go somedays withoout being itchy it only happens with the trigger of heat or stress, by the time Ive taken a tablet and its kicked in the syptomswill have passed.
My skin is not dry no more so anyway than any other time of the year, I just cant figure out why it happens during these six to seven months?
armaan28284 mark48228
Posted