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

    First get your thyroid evaluated by an endocrinologist You may be trending toward hypothyroidism. It is not unusual for patients with chronic spontaneeous urticaria to have evidence of thyroid autoantibodies ,however thisis not the cause of your physical urticaria it is an incidental finding.

    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

  • Posted

    You poor love. I can only repeat that I am sure it begins with stress. That is the reason I am trying a hypnotherapist.

    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.

  • Posted

    Hi CU12. I have had hives since 2010. It started out as just being welts everywhere and being really itchy. They vary in strength. I had a real bad one New Years 2011 where I ended up in hospital because it was so intense and I was having trouble breathing and had a panic attack. Then they were kinda "normal" like just being the itchiest person ever and having huge welts all over me. Then it seems lately that they are getting worse. I had one where the it kinda went straight past itchy and straight to painful. I was in the bath screaming and it felt like my face was heavy. I couldn't even walk and crawled to the couch and slept for a day and a half. 2 weeks ago, I was walking home from a work event and I felt the tingle. I was like "oh no, have to get home quick". Got to where there was maybe 3 blocks to my house where there was a park and just started throwing up a little. Then I couldn't stand, so I lay there. It felt like my face was melting off.  I got up maybe 10 times and had to lie back down 10 times. I couldn't make it home and for the first time I had to call the emergency number for myself. Now I'm on ranitidine and cetrizine with prednisone if I notice the tingle, which they are claiming is the cure. I haven't had hives since then, but it's not unlike them to disappear for weeks or even a couple months. But I will be putting it to the test when I start my exercise plan in a few days. 

    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.

    • Posted

      HI , KINDLY LET ME KNOW HOW YOU FEEL NOW... here itself some one commended that excercising thogh worsen it initialliy but doing at home and sweating for twenty minutes at home and then go for work,,,

      some suggested baking soda sounds good...

  • Posted

    Hello,

    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 !!

    • Posted

      Yup, I've noticed that works too. Though I'd probably alternate push ups and pull ups. and lunges and squats and planks and crunches to balance out the exercise and avoid muscle over development
  • Posted

    U sound like me. I've had it though 5 years been on citerizine with ranitidine didn't help. . This year changed to the fexo and monsculat. Worked for 3 weeks. .  Nothing's helping.  I am going insane. Was told my histrmines  leak.  I am going back to doc tomoro.  Need new allergy tests done. I'm having such a bad break out at the mo my neck and chest are raw from scratching. Have some derma cool cream that does feel nice a cold for a whole then wears off i have blotched patches all over me too now that look like vitiligo     Do u think getting stressed makes it worse ?   So good to see I'm not alone xx
    • Posted

      Hi Joanne

      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

    • Posted

      Oh Wendy thanks so much. I live in the uk but do have privatehealth care

      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

    • Posted

      Hi Joanne

      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

    • Posted

      You may not be testing postive  for any of the panels.  This situation is  generally categorized under auto immune disorders.  what that means is that when you can't explain a condition conclusively, it gets classified under that😀 .

      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.  

  • Posted

    Hi everyone. I've had hves for 5 months now. They come back whenever I stop the medications and its very very frustrating, as you all know. I've had numerous tests but all showed nothing. I'm wondering has any of you heard of a treatment method that involves a doctor injecting your own blood back into your body for 7-9 weeks, once per week? I personally know two people who had chronic hives for over a year and they were both cured by this method. However I'm having a really really hard time finding a doctor who can discuss this method with me, let alone treating with this method. All doctors cut me off mid-of-sentence and basically told me nope, aint gonna work. Take these meds and be off.

    .....anyone?  sad

  • Posted

    Hello everyone.I'm so glad I finnally found someone with the same problems.Just want to let you all know I'm not English,so sorry for any mistakes made.First of all I want to say I really know how u all feel and I;m so sad about this sad I met dermatologist today and I have an a diagnosis of Cholinergic urticaria.It started 2 years ago and only today I went to dermatologist because my condition getting worse.Exercise,hot baths,spicy foods,emotional stress and every time then I go from cold place to warm makes most of my body very itchy sad  From tommorow I will start using Fenkarol 25mg 2x a day,Opexa 20mg 2tabx1day and Physiogel hypoallergenic(calming relief) after shower.Doctor told me to use all this for 1 month then stop it and see if urticaria gone.I will let u all know if this helps ! Don't lose your hope ! 
  • Posted

    Im not sure if I have the same problem, I get very itchy all over when hot or stressed and the only way to stop it is to cool down.  However whats odd in comparison to what Ive read is It only startes towards the end of August and lasts until around March/April, also I dont get itchy when Im in say a steam room which is a hot environment.  I live in the UK, and this started last year previous to taht no other issues, no change in anything else, diet, soaps medication etc  - so not sure why I suddenly started getting this last august, why its only during a specific part of the year.  As with the other posts on here, it hold you back, I cant exercise without breaking out in extreme itching all over, when I stress it starts up until I calm down which makes me believe its some internal issue casued by maybe a rasise in blood pressure.  

    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?  

     

    • Posted

      Hey Mark, so my reasoning for that would be that, because during spring time and summer you tend to sweat a lot, you exhaust your autoimmune response, and thereby weaken it. During the winter, possibly, histamines or whatever bad substance that causes this reaction builds up in your body, and then when you have  a reaction it goes into mayham maximum overdrive mode. My best advice, if it isn't too painful, is to work out on the treadmill for twenty minutes a day and really build a good sweat. It will be painful, and unmanageable at first. But in my experience it's better to break out then in a controlled environment then when you are with your friends. I do think, depending on the severity of your condition, it will lessen with increased sessions. Try it out, for maybe a week (daily 25-30 mins high intensity treadmill) and let me know how it works! Remember, if you're not sweating, it won't work.

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