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
rachel89249 CU12
Posted
Have you tried montelukast with fexofenadine? It's really helped me, alone they didn't, I'm now on 180 mg fexofenadine 2 x a day and 10 mg montelukast with 25 mg atarax for itching, been clear for the first time in 8 months. Worth a shot with dermatolagist
john78399 CU12
Posted
Not sure if anyone is still posting in this discussion but I could sure use any help you can offer. I've had urticaria for 9 years, as well as hot flashes/overheating, dermatitis, fatigue and more.
Have any of you ever connected your symptoms to an allergy to metal? This can come in the form of an implant, a vaccine or other. Really appreciate any help!!!
Kittygan john78399
Posted
Yes Nickel start my urticaria off but mostly the sun, cold, heat, stress, contact, skin pressure etc am waiting for injections now from the hospital but I stay house band and only drive wen I go out do I don't get stressed.
jordan12345 CU12
Edited
Hi, I had and still have the same issues you have. With almost identical problems and I have not found a cure, however I have concurred it but I can guarantee it is not easy.
I read an article and decides it couldn't be any worse than hiding away from life so I gave it a go.
They way I've managed to solve it is by actually exercising to force my glands to sweat. I also tanned to force my body to sweat even though I barely did for the first week or so. I drank lots of water and eventually it began to seep out of my glands. The pain was excruciating but it's like a battery, if you let it charge up then the zing that you feel is strong but as you empty the battery they become far less painful to the point where I am now able to go to gym 4 days a week and play sport again.
I've just recently had a month off due to the flu and I can feel it coming back so it's time to hit the gym to prevent the battery from charging up. The hives will also go away as the uticaria flares it up so take it easy and force yourself to sweat.
Having been there I can only say goodluck and I hope it helps you like it did me.
phil89291 CU12
Posted
Hi buffy my name is phil I have the same symptoms as you literally the same ..... What would you advise me to take for these symptoms it's really making me depressed and getting me down please can you help and advise me thank you phil dicker
jose63744 CU12
Posted
Hello CU12, my name is Manuel and I've been experiencing the same affects just as severe. All the symptoms you addressed have been exactly what Ive been going through. I am unable to do anything I used to do on a daily basis especially physically. I am 23 years old from California. I used to weightlift everyday play basketball and other things, but now I can let even be in the sun for an extended period of time before an outbreak occurs. I seen neurology first in the begging stages thinking it was the answer taking 900mg of gabapentin didn't help. Then I did more personal research to find out it was this condition. Now I am planning to visit allergy specialist this week hopefully I am able to gain some type of help because it truly is a burden. I understand this was posted over a year ago, have you been able to find any answers or type of treatment that may help? Please get back to me as I am in the same boat you are searching for desperate assistance. Thanks for your time!
cindy09985 CU12
Posted
One day, I sat down to think about my life and was scared it could be life threatening for me. And then I remembered the creator of the universe. The one who create the blood and water, the one who formed us in his own image, the king of all kings, the alpha and omega, the one that knows the beginning from the end. And so the spoke with my creator to take away this hives and asked for forgiveness of sin. I prayed into water that he should turn the water to the blood of Jesus and I drank it with faith. I did that for two to three days and so my healing began. Like joke the itching reduced, redness and swollen reduced gradually and here I got healed permanently.
I got healed I thank God. For you to enjoy the benefits of healing. You have got to re- trace your step to the maker. Jesus Christ. He alone can heal completely because he is the creator. I beg you that is reading my story. Kindly accept Jesus as your lord and Savour. This are end times. All sought of things are happening everywhere. Making heaven is imperative so as not to go to hell. Everything the Bible talked about the end time are happening.
Jesus loves you and came to die just that you and I may be saved and inherent eternal life. A simple prayer as lord Jesus I know I am a sinner, by your mercy kindly forgive me, I accept you as my lord and Savour with my heart and my mouth I confess you are lord over my life.
It that simple. God bless you as you make the right decision today.
SebastianCHN CU12
Edited
Hey CU12
I'll tell you about my journey with idophatic angioedma and how I was cured. Basically in Nov 2014 i went out with a few friends to a seafood restaurant( im not allergic to seafood btw). I had some calamari and guinness. Later that evening i noticed a small bump or rash on my chin. I was surprised because Im from the Caribbean(we eat alot of seafood) but i went to the pharmacy and bought some zrytec. Took it and the rash went away.
About two weeks later the left side of my face became swollen. Went to the campus doctor (I go to school in Canada) and they gave me some antibiotics to try and those did not help. They then did some blood work for my thyroid, tested for mumps and for cellulitus. THey all came back negative. So i began praying to God for some help because the swelling would reapear every 4 days after it intially goes down. The annoying part was that it would be different parts of my face that would begin to swell. My eyebrow, eyelid, chin, cheeks, forehead.
In January 2015 I was given an appointment with a local allergist who told me i was experiencing chronic uticaria and angioedema. SHe tested for HAE but that came back negative as well. She started me out on ceterizine 20mg a day for a month and told me to come back. Over that month the symptoms did not ease up and continue to ravage on. I became self conscious and started to become depress and started to skip classes because of my swollen face. I started eating alot more and stopped going to the gym as much causing me to go from 165 to 190 pounds by that summmer. Anyway I went back to the allergist the following month and she told me to contine with the same treatment for another month. To no avail the same problem persisted. I prayed every night for help so that i would be healed from this illness. Everytime the swelling went away i was like finally tthis is going to be the last time but it wasnt. 4 months later she prescribed me to take ranitidine along with the cetirizine but it didnt work. FInally I went back home for the summer (8 months living with the angioedema symptoms) and saw an allergist there who took me off of all of the meds i was on. He told me that obiviously this drugs werent working for me and prescribed that i take 5mg of levocetirizine and 200mg of plaquenil twice a day(this was july 2015). Immediately i began to see results and the swelling went away and didnt reappear at all. I continued that regime for the next 5 months. I curently take half a plaquenil and one 5mg levocetrizine every 2 months. I havent had an angioedema attack since July 2015. I thought about telling my story before but I prayed on it and wanted tto be sure i waas cured of the angioedema before i shared with everyone. I use to think there was no cure for it but God answered my prayers. He led me to the right allergist who was able to rectify the problem. I was told to share my testimony with you guys. To let you know that through God all things are possible once you have faith. I hope my story encourages someone out there to not give up.There is a cure and a way to live without the daily stress of angioedema and urticaria.
God Bless Everyone
hakiddy CU12
Posted
Hello CU12,
Im Ha, I am also suffering with this problem, Just now I saw your post, I can easily understand your pain and feel. This is a very late reply to you. As everyone said before, whomever have this problem, should try 3 steps:
1. Avoid foods like carbs, caffine, alchohol and sugars. And eat more fiber foods.
2. And the best medicine from the nature for this problem and that medicine is; drink bitter guard juice daily twice.
3. Decrease the stress and anxiety in your body, and try to be very cool in all the time.
Try these 3 steps for at least 1 month. Hopefully you will see the best result.
Thanks and best of luck😊
stephanie12351 CU12
Posted
Hello I have had Cold Induced Urticaria since I was 10 year's of age. My life was also being destroyed allergist and allergy testing and trying to desensitize me to the cold using expensive products nothing helped. That is until my very smart PCP came up with a medication that he heard of during A Medical Health Seminar and it saved my life Doxepin 10 mg before bed every day since I have been 17 year's old. If I have any break through I take 20 mg until controlled and go back to the 10 mg I live in an area that gets cold snow cold creeks etc I was getting hives from head to toe small ones medium size and Large one's it was so horrible I couldn't go out in colder months no swimming depression anxiety . Please anyone if you suffer ask to try this out. I have to stay on top of it by taking my meds and paying close attention to my skin and how it feels if I feel reactive I dose accordingly. I'm always going to be on Doxepin for the rest of my life but at least I can cope with it. I hope that I can help others by sharing this.
vickipennington CU12
Posted
Hello, I've had Cholinergic Urticaria for 4 years now and I literally just read this and I cried and now the rash has came up on my face and my body. I can understand what you are going through. My life is so hard and I can't do normal things anymore. I felt so depressed but I'm ok now. I thought this condition was rare but now doing research, a lot of people have this. This was 4 years ago, do you still suffer with it?
nigel30627 vickipennington
Posted
I cried at CU12's post because Iknow as we all do on the forum what this disease does to us physically and mentally.Its a painful roller coaster of a life.Im now into my 3rd year.Some say 2to 5 years is the usual time scale before it clears up but I know people who have CIU twenty years,I just pray it clears up at some point.
Kind regards,
Nigel,ps,there aint no place on my body where I havnt had a hive .
nkarafo CU12
Posted
I have Cholinergic Urticaria for many years! My symptoms are from mostly from heat, sun and some cases from stress. I live in Greece where we have too much sun, especially in summer and it was so much a pain for me to have this allergy!
The things that are helping me are the medicine: Bilargen (1 pill every morning) - it is like Xozal, Zirtek, etc and when I know that I may have symptoms, then I take Ganoderma lucidum / reishi pill. For example before doing exercises or before take go for swimming outside, I take 3 pills of Ganoderma. Ganoderma is the only that helped me a lot! It is from mushrooms. Hope this will help you!
nigel30627 CU12
Posted
Oh mate,I know how you feel,Iwas on a drug called Xolair last year,it cleared the urticaria up but now its returned,I also get angioedema in my hands,dont feel like socialising and also feel really depressed.Ive sent photos to my detmatologist to get back on Xolair,Ive had to take steroids today because I couldnt stand the pain,Its relentless and hurts.
Your very welcomed to message me anytime you like,your not alone.
Kind regards.
Nigel.
happycamperand3 CU12
Posted
Glad to hear that some of you have found effective treatment and coping strategies. I am really suffering with what i believe is cholergenic uticaria. My triggers are overheating such as from exercise or being dressed too warmly or hot weather and stress. Getting in a cool place helps, but once triggered the itching is horrible and can last for several hours. It is really limiting my ability to do the activities i enjoy such as hiking, but even walking the dog can be difficult.
Other medical conditions are hyperparathyroidism (treated by removing 2 effected of the 4 glands), hypothyroidism, and depression for which I take Celexa. i used to get bad itching when i ran when I was younger, but it wouldn't happen if I ran regularly only if i stopped for a week or more.
The uticaria seemed to start about two years ago the spring (hot weather) after my endo put me on Risondronate for osteopenia. I can no longer take it as it definitely makes the uticaria worse.
Currently I take one Allegra each morning and one Zyrtec each evening. i used to take Claritin for rhinitus but stopped. My rash isn't very visible, the primary symptom is the intense itching, although I do sometimes have to blow my nose when the reaction occurs.
What is the best kind of doctor to diagnose and treat this?
Thanks for reading, Linda