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Cholinergic Urticaria has ruined my life

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CU12
CU12

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

237 Replies

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  • rgwotcher
    rgwotcher CU12

    Posted

    Hi frnd, until 6 months ago i was suffering with this prblm too...i was geting frequent attacks on going out in afternoon..on eating spicy foods..on getting stressed..in blnkt..on exercise for 2 continous years..and in my experiance thre is no real nd permanent cure from alopathic or herbal treatment only relief..i tuk homeopathic treatment becoz i had heard for allergic prblms homeopathy is best wid no side reactions but it has slightly tough dieting condns..at frst my prblm increasd nd i was gting crazy on slight heat but i was patient becoz dotor told me tht wid homeopatic medicines initialy prblm increase nd thn strt to cut of frm the root..to my amazement i started showing improvemnt within 15 days nd i culd stand in sun for 20-25 mins widout any outburst in my scalp nd al over my uper body..and with 3 months of continual treatment i m hapy nd cool now..nd i think that evry being wid this hell urticaria must take homeopathic treatment frm today wich was a cuse in my social life..!!
  • alonzo04458
    alonzo04458 CU12

    Posted

    Hi we are going through the same thing. I am young and now I feel as if my life it at a stand still. I feel like I'm getting depressed more and more everyday. I hate this. I can't run eat hot foods nor can I work out. This depresses me the most. I'm starting to hate life and I only had this condition for 5 months. I try to stay positive but man it's crazy. Can I ask you this. We're you stressed before you got this condition
    • wendy62425
      wendy62425 alonzo04458

      Posted

      Hi Alonzo

      Hang in there! Yes, it seems like I started the Urticaria during times of stress in my life.   For me it appears to be an autoimmune issue.....I guess that's what stress can do to our bodies. What are you taking to fight your hives? This will pass!  Make sure you drink lots of water. Keep thinking positive thoughts....again..this will pass!

  • mazza1970
    mazza1970 CU12

    Posted

    Hi all... I am a long term sufferer of eczema/urticaria/reactional skin etc since I was tiny and I'm now 44.... I so sympathise with everybody who has commented and especially CU12... I know that the initial post was a while ago now but just wondered how things were.  I have been on steroids and immunosuppressants for too many years and after lots of chest infections/pneumonia have had to stop them abruptly. I started phototherapy to try and combat the flare ups and things were going ok but now I'm on nothing and it's just got gradually worse so that now it's hot, red, itchy, painful, sore and burning all over most of the time.  Anything can trigger it cold, heat, water, sweat, wine, stress, tiredness, periods.... I never really know what's going on only that I can't bear it.  In desperation I started researching and thanks to this feed am now going to go and see a Chinese herbalist, start yoga, stop drinking wine... I'm still on fexofenadine twice daily and hyroxizine at night but would love to be on nothing. Anymore advice would be hugely appreciated as I don't think modern medicine can offer such things as skin transplants!!!!!!! People who have never suffered this have no idea of the misery it brings... I was meant to be going out tonight but declined as I look like a burns victim..... Thanks
  • MusicBrandon
    MusicBrandon CU12

    Posted

    Hey there,

    I realize it has been 7 months since you posted, but I hope you will see this.  

    As far as I can tell, I have near identical symptoms to you.  Extreme itching / pain, best compared to be splashed with boiling oil for several minutes at a time over the torso/head.  Attacks occur from heat, spicey foods, emotion from playing/listening to music, ANY form of stress whether it is a sudden sound or just being around others.  Even thinking about the pain could cause enough stress/fear/emotion to bring on pain.

    I have also tried an array of antihistamines, and recently underwent Xolair injections for several months, to no avail.  I have all but given up on a medical treatment, though I often check medical journals for new breakthroughs.  Like you, I have also observed the large changes in my mental health and emotional wellbeing.

    Now that I have explained my condition and why I think we are similar, I want to offer a suggestion. 

    I have found that by excessively sweating (running in a hoody/track pants) I can drastically reduce both the severity and how often the attacks occur for the next two days.  After 3 days of not sweating excessively, it returns to normal.  There are other reports of success through this method.  The biological rationale is that you are depleting your cells of the molecules that cause the pain within 20-30 minutes of intense running, thus leaving your body 'exhausted' of those molecules until it can regenerate them.

    I've done some reading, and for some people with CU, exercise could cause anaphalaxis, in which case this is not a valid option.  However, if you are truly at the end of your rope as I was, then I urge you to give the 'excessive sweating' option a go.  

    I remember when I began this regimen, the sensation was that of a full blown attack for 20 minutes.  I continued running through it even though every part of me screamed to stop and scratch or throw myself in a shower.  After 20 minutes, the pain began to subside, and eventually was replaced with a light sting.  

    I have continued a regimen of forced sweating since that time, some months ago.  Every time I run, I still get an attack, but I go through it knowing that the rest of my day will be bearable.  It really, really sucks each time, but it has been worth it.  I have regained a modicum of my life, and there is a victory in that.

    I hope this will be useful to you, or anyone else reading this, and I wish you the best in your endeavours.

    • jamessimpson
      jamessimpson MusicBrandon

      Posted

      I agree about the 'excessive sweating' treatment. I use this myself. I have a Nordic Track ski exerciser, turn on 2 small portable heaters in the room for 20 minutes before I start exercising, and wear an insulated quilted jumpsuit, under which I wear 2 t-shirts, a sweatshirt, insulated blue jeans, and a hooded PVC sauna suit, to force myself to sweat as fast as possible. This helps sweating begin much sooner, after which the hives completely stop. This definitely does deplete histamine for a day or so, and a good way to decrease the hives. Sweating may also help by sort of cleaning out the sweat glands. As I describe in my other post, new research has found that CU may be caused by keratin deposits literally clogging sweat glands which makes it hard to sweat. Search for cholinergic urticaria and hypohidrosis for the studies showing the connection between CU and a defect in sweating.
    • MusicBrandon
      MusicBrandon jamessimpson

      Posted

      Good to know that this has worked for you as well.  I read your other post.  I have taken cetirizine for 60mg/day, though like all other antihistamines including hydroxyzine and ketotifen, I found that they worked for 1-2 weeks, until their beneficial effects stopped.

      You said that you've had this condition for 30 years.  I guess I'm at the stage where I have to accept that I will likely have this condition for many years to come (I've had cholinergic urticaria since June 2013).  It doesn't seem to be a seasonal illness for me, since I have had it throughout the year.

      Do you have any advice for adjusting to this?  How do you arrange your life around it?  For example, I find that I am extremely hesitant to attend social functions or to speak with strangers now, on the chance that an attack will occur.  

      And maybe more importantly, how do you share this with people close to you, including your family?  My own family is well aware that I have cholinergic urticaria, and they have seen me incapacitated in public from it.  But I've never told them the total effect it has had on me, from being unable to be social as mentioned above, to being unable to play my music which I love very much.  I'm starting to begin these activities again with the success of the 'excessive sweating' treatment, but the point stands.  How do you let your loved ones know in a way they can accept it, but not overly pity you for it?  It pains me to have them overly worry about me, but at the same time, I need someone else in my real life to communicate with, and to understand what I'm going through.  Perhaps this is selfish of me.

      I hope these questions make sense, and thanks in advance!

       

    • onovtec
      onovtec jamessimpson

      Posted

      ditto for me (same as MusicBrandon and Jamessimpson), I run with multiple layers, I sweat faster and then feel relief for the rest of the day.  The trick for me is to get to force my body to sweat faster as I feel much better after that. and ideally, I feel amazing after 3 consecutive days of running 25 minutes each day.  I am glad to see I am not alone, but wish there was an easy fix, as I have had this issue for well over 20 years.  I hope for all of us, that there is a full cure.  for me it is much worse in winter than summer.
  • alonzo04458
    alonzo04458 CU12

    Posted

    Woaaahh. Jus chill. I go through the same thing. I want change just like you but killing yourself is not the option. I want to die sometimes to but God want let da pain last forever. I been feeling like giving up. I have these flashes of out break that attack in the weirdest places and they hurt and hurt bad. Pain is unnatural. I know. I'm on only 22 and in college. I was a weightlifter and sprinter. Never thought this would happen to me. I been going through for 6 months. Just stay hopeful. If u believe in God I would suggest reading the book of job. Maybe it's better days ahead
    • jamessimpson
      jamessimpson alonzo04458

      Posted

      Try not to worry about it (I know it's hard). Meditation or progressive relaxation exercise may help (I find "mindfulness meditation" helpful, basically relaxing the entire body and concentrating on each breath and on the present, not past or future). Research shows that daily meditation actually reduces stress hormones (adrenaline, etc.) and has other positive health effects that could minimize outbreaks. As far as arranging your life and social events, regular exercise along with Cetirizine, and possibly meditation, can give you good confidence that outbreaks will be minimized, especially after exercising for the day. After a good exercise session and a good, full sweat, I'm totally confident I won't get any hives for the day. To explain to family/friends, you could show them a reference article on CU from Medscape or similar website, proving it's a recognized medical condition that is indeed refractory to most every medication for most people. I'm surprised Ketotifen didn't work for you, it's the only antihistamine that actually blocks histamine release (rather than blocking histamine receptors after histamine has been released). I took Ketotifen as part of a research study years ago, and it worked well, but the sedation wasn't worth it. CU also may stop at any time, I have had periods of several years when I had no hives, but my doctor says it tends to 'wax and wane', probably dependent on environmental factors, seasonal allergies, etc.  i do have allergies to grasses and trees, dust mites and molds, and have been on allergy shots for 5 years now, but the shots haven't helped so far. Exercise and until I really sweat have been my best treatment by far.
  • MusicBrandon
    MusicBrandon CU12

    Posted

    Without highjacking this thread:

    To all affected/interested parties:

    A new journal has just been published detailing (near) everything pertaining to chronic urticaria, including cholinergic urticaria.  It also has a section on possible treatments, and grades them according to viability/side effects.  For anyone who wants to understand this illness further, this article is a very useful resource.

    Link:   http://onlinelibrary.wiley.com/doi/10.1111/cea.12494/full

  • jay79605
    jay79605 CU12

    Posted

    Hi CU12, I just had to comment here, I have the exact same symtoms and problems like you do, I can't even exercise or go out if its too hot anymore, even wearing fitted clothing makes me break out. I am a 32 year old female and my skin started when i was 8 but not bad just a few little spots here and here, then as a teenager around 18 when I was finished with school in the carribbean it became worse. I have tried to live with it but failed since I had no life at all, trying to go out in the night like a nightingale. I migrated to the uk, it has helped me in the other seasons but summer and I has a problem, my Citirizine I have to take everyday,but it does not help and now the government wishes for me to go back to the hot tropical island where I can't even breathe and has the heart to tell me that I should be able to cope with it. I might join you CU12, I am at my wits end and people does not believe what people like us are going through. They dont believe that this is my living hell problem and it has not been fixed, I have seen every doctor, specialist, dermertologist and all had a different theory but came to the same conclusion, they can't help me. 
  • sam1427
    sam1427 CU12

    Posted

    Google "Quercetin". Take it for not less than 6months  to see the results. It will help to one degree or another. I take NOW Quercetin with Bromelain. Another powerful herbal antihystamine is "stinging nettle". I swear by both.
  • sam1427
    sam1427 CU12

    Posted

    You have mentioned thyroid issue.Here is up to date guide.

    Most doctors know hypothyroidism is an autoimmune disease. But most patients don't. The reason doctors don't tell their patients is simple: it doesn't affect their treatment plan.

    Studies show that 90% of people with hypothyroidism are producing antibodies to thyroid tissue. This causes the immune system to attack and destroy the thyroid, which over time causes a decline in thyroid hormone levels. This autoimmune form of hypothyroidism is called Hashimoto's disease. While not all people with Hashimoto's have hypothyroid symptoms, thyroid antibodies have been found to be a marker for future thyroid disease.

    The following are the five major thyroid patterns that don't show up on standard tests

    1.HYPOTHYROIDISM CAUSED BY PITUITARY DYSFUNCTION:

    TSH below the functional range (1.8 ? 3.0) but within the standard range (0.5 ? 5.0). The T4 will be low in the

    functional range (and possibly the lab range too).

    2.UNDER-CONVERSION OF T4 TO T3.

    This common pattern is caused by inflammation and elevated cortisol levels. T4 to T3

    conversion happens in cell membranes. Inflammatory cytokines damage cell membranes

    and impair the body's ability to convert T4 to T3. High cortisol also suppresses the

    conversion of T4 to T3. it doesn't matter how

    much T4 you take; you won't be able to use it. you'll have hypothyroid symptoms, but your TSH and T4 will be normal.

    If you have your T3 tested, which it rarely is in conventional settings, it will be low

    3. HYPOTHYROIDISM CAUSED BY ELEVATED TBG.

    Thyroid binding globulin (TBG) is the protein that transports thyroid hormone through the

    blood. When thyroid hormone is bound to TBG, it is inactive and unavailable to the

    tissues. Elevated TBG is caused by high estrogen levels, which are often often associated with

    birth control pills or estrogen replacement. When TBG levels are high, levels of unbound (free) thyroid hormone will be low, With this pattern, TSH and T4 will be normal. If tested, T3 will be low, and T3 uptake and

    TBG will be high.

    4. HYPOTHYROIDISM CAUSED BY DECREASED TBG.

    But too much free thyroid hormone in the bloodstream causes the cells to develop

    resistance to it. So, even though there's more than enough thyroid hormone, the cells

    can't use it and you'll have hypothyroid ? not hyperthyroid ? symptoms. Decreased TBG is caused by high testosterone levels. In women, it is commonly

    associated with PCOS and insulin resistance. Reversing insulin resistance and restoring

    blood sugar balance is the key to treating this pattern.With this pattern, TSH and T4 will be normal. If tested, T3 will be high, and T3 uptake and

    TBG will be low.

    5. THYROID RESISTANCE.

    In this pattern, both the thyroid and pituitary glands are functioning normally, but the

    hormones aren't getting into the cells where they're needed. Note that all lab test markers will be normal in this pattern, because we don't have a way

    to test the function of cellular receptors directly.

    Thyroid resistance is usually caused by chronic stress and high cortisol levels. It can also

    be caused by high homocysteine and genetic factors.

    Causes (read more in the Chris Kressser free ebook"Thyroid Disorders"):

    -The Gluten-Thyroid Connection

    -Iodine for Hypothyroidism: Crucial Nutrient or Harmful Toxin?

    -Selenium ? The missing link for treating hypothyroidism?

    -Thyroid, Blood Sugar, and Metabolic Syndrome

    -The Thyroid-Gut Connection

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