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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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  • desmond01416
    desmond01416 CU12

    Posted

    About two months in now to a diet avoiding high histamine foods, I'm finding that's reducing frequency and especially severity of flare ups. Keeping alcohol to below recommend daily max and not consecutive days seems to be most important. Also, fexofenadine daily with an extra one as soon as I notice it tickle seems to help too. Finally, when it does happen, about 2-3 times a month, a half or even a quarter a 25mg doxepin helps me sleep fine and seems to settle the bad symptoms down straight away. I talked to my GP about Xolair. He said that he was only aware of it being used in severe Asthma. He said he could refer me to immunology again but they weren't so helpful last time, basically giving up and calling it idiopathic CU and telling me it would probably go away on a year or two. It was me who read about doxepin and demanded it, which was the first real life saver, literally. I'd like to try Xolair but don't fancy the slog of referrals again, since things are just about manageable. Oh, I should also mention I've been avoiding sulphitespecially and benzoates. That could be helping.
  • sara66775
    sara66775 CU12

    Posted

    If you google 'Xolair patient information' it shows that it's used for treatment of chronic asthma and chronic urticatia so your GP could see this very clearly too. I think sufferers get referred to dermatologists when they should be going respiratory consultant/allergy specialist route. In my daughter's case she has a definite diagnosis of exercise induced urticatia/ anaphylaxis...v rare but in a way I feel very lucky that we have a diagnosis and started treatment all within 8 weeks! Good luck & hope things cntinue to improve.
  • marcus_Jackson
    marcus_Jackson CU12

    Posted

    Hey bud, I feel your pain!

    I have been suffering with both chronic urticaria/oedema for about 2 years now and it has been a nightmare when it kicks in. However...I have had periods where 4 months have gone by without a single flare up and I can commence with the exercise I love...maybe a few small hives in between....but nothing problematic.

    I take Fexofenadine Hydrochloride 180 mg morning and evening and it works like an absolute treat. However - I have found that this is HUGELY BRAND related. Two fexofenadine manafactures to use are TELFAST and Chanelle ltd from ireland. These definitely work the best.

    The one thing that may be extremely hard to hear for you (as well as it was for me!) is that you HAVE to change your diet and drinking habits. And by diet I mean ALCOHOL. It absolutely killed me to hear this but it has a significant role in how many hives you get.

    Being out of shape, stressed, anxious, not eating enough fruit/vegetables, and not getting enough water in your day to day activities, it can majorly affect your well being. Doctors say it's nothing to do with autoimmune problems, but actually that's one of the route causes to urticaria/oedema. When I feel healthy, rested, not stressed, or not run down I will never get any hives.

    The major contributing factors to causing hives/oedema are the following;

    STRESS

    TIREDNESS

    BEING RUN DOWN/SICK

    ALCOHOL

    POOR DIET

    (In some cases strenuous exercise whilst other above factors are in play)

    I have battled through this and have found when any 3 factors are active at once you will get hives. Add another factor to the mix and you will get worse. A good example is that - On holiday generally none of these are active so you can dabble in histamine inducing substances like alcohol and have a poor diet. I can eat and drink as much as I like! However if I'm stressed, tired and run down - alcohol triggers hives and then if it's bad enough, it will onset angio oedema as well! So be careful - if you are careful enough in managing these factors through your day to day life your hives will be kept to a bare minimum!

    Hope this has helped you smile

    Marcus

    • thoris35
      thoris35 marcus_Jackson

      Posted

      Exactly, Marcus! I completely agree with your assessment. Will you try to taper off the meds at some point? This is where I am at. I don't like the idea of taking pills for the rest of my life.
  • aj13692
    aj13692 CU12

    Posted

    Hi, I really sympathise with you but have a suggestion for you.  You should get out and run just as you used to!  I have huge experiences with stress and anxiety and I have had a recent bout of terrible urticaria which has lasted over 2 months.  I write this in hope that 75% has now gone and I am certain the remaining is on it's way out. My father died around 3 months ago, I thought I was dealing with it but really I wasn't, I'm certain this stress caused my hives to swell around my body, from top to toe.  It made me feel downer than I was, I was mis diagnosed numerous times which only ended up being worse.  Then I decided to cover up and get out and jog, it was what I did before dad died, up to 30 miles per week, I began again and with medication I relaxed and became healthy.  I'm convinced this was stress based and maybe...just maybe yours is too.  I took 180 mg of fexofenadine but only once but the saver was 25mg of hydroxyzine which I took at night, it sedated me so I could get a good nights sleep and helped the recovery process........and helped me get me out and about...good luck!
  • thoris35
    thoris35 CU12

    Posted

    Hello CU12 and peeps. I'm Sorry that this affliction has brought you to the brink, but so interested in your discussion. Thank you. I have had chronic urticaria for 2 years now. I am not cured, but I am finding my way, I think. It started with a couple of one week long full body episodes that were a couple of months apart. The third episode never ended. I have hives everyday in some form ranging from a couple of specs that look like mosquito bites up to literally head to toe rash and "rafts" of hives that are thick, burning, bruised feeling. . . past itching. They can be on the palms of my hands and soles of my feet, and can be a single hive up to the size of a gulf ball. Let me insert right here that you can find extreme and magical relief from apple cider vinegar. Swab it all over your hives and skin. I told the allergist this and she said good, but don't drink it, it may inflame hives if taken internally. I am a pale skinned red head and so already had a dermatologist that I trust for various minor episodes of eczema, and hyperhydrosis (sorry folks, keeping it real) and such. So, when this happened I went to her and she immediately said "you have heat allergy, I am referring you to the allergist." She also told me to begin taking antihistimines. I told her "antihistimines don't touch this stuff". She confidently informed me that I need to take one Claritin (loratodine 10mg) at 8am, another one at noon, and a Zyrtec(cetirizine 10mg) at 8pm. I did. And for the first time in a long time the hives and itching subsided. But they were not gone. The allergist told me that this is urticaria related to the action of the cholinergic receptor. The receptor is responsible for adapting to changes in temperature and pressure. The pressure related hives you will find on your feet, from your shoes, under your belt, or bra, or on your butt after a long car ride. The heat related hives (which people get in extreme cold as well, perhaps because their body is trying to heat them up) you will find scattered around somewhat randomly, or in hot places like elbow and knee bends and, the like. The heat that causes hives for me is most often internally generated. I am an amped out person, active, and social. So, part of my treatment is an easy yoga class, to try and bring the whole energy level down. I continue to have break through episodes at the time when I am having the most fun! Like on a trip, or during the holidays, or when there is too much stress, whether good or bad. Others here have mentioned alcohol, lack of sleep and diet (I would throw in the menstrual cycle) as triggers . . . I think it is when one or more of those things happens at a level to create a rise in body temperature. It might be the laughing, gabbing and dancing that went along with the alcohol and chocolate, that caused the hives. Most recently, I asked my allergist what the next step would be to get rid of these break through hives and she told me to add a pepcid AC to the 3 antihistamines per day that I am using. I had a picture of myself leaving the pharmacy with this weeks "grocery bag" of goods and decided once again to get to the source of the problem instead of attending the symptoms. With that in mind I decided to see what Chinese Medicine could do for me. I know nothing about it, but I have been going to a lady once a week for 4 weeks. She gives me acupuncture and sends me home with bags of herbs to brew into a drink that I drink twice a day. She also reminded me that sugar causes inflammation. She said I had excess heat on my kidneys. Her hope was that the "cooling teas" would help calm the heat and my body would get it's balance back. The very first week I had NO HIVES. It had been a solid 18 months since I had seen my body without spots or red ruddiness. I looked and felt amazing! I got compliments everywhere. The second week I did the same thing and dropped the zyrtec. I stayed on 2 Claritin a day and the tea, and got through the holidays pretty well. Now that things have calmed down, my hope is to continue the tea and wean off the antihistimine and then off the tea. I am still having some breakthrough hives but the pressure hives no longer happen, and the hives that come are not as itchy. So, we shall see. Meanwhile, for many of us the hives will pack up and go as quickly and mysteriously as they came. I hope I haven't gone on too long. I love to read what you all have to say too. Keep up the positivity!
    • wendy62425
      wendy62425 thoris35

      Posted

      Hello Thoris

      thank you for sharing....I see this post was a couple of months ago and was wondering how you are doing.  Also could you let us know what was in the "cooling teas". And what herbs is good in your drink? Natural ways to heal our bodies is so good!  Looking forward to hearing from you and hope you are doing well!

      Wendy

    • desmond01416
      desmond01416 thoris35

      Posted

      That's mad, you could have been writing about me. I also have hyperhidrosis which came on with hormone changes at puberty. I had moderately severe Acne too which they treated with roaccutane.

      My urticaria have 90% disappeared since changing a few things:

      Giving up: 

          Caffeine

          Alcohol 

          Gluten

          Lactose

          Sugar

          Processed factory foods with salicylates, sulphites and artifically added antioxidants

      Taking up:

         Daily Zen meditation and intensive retreats

         Vitamin D, Magnesium supplements

         Kim chi for respiratory infections and gut problems

         Gabapentin for pain / itch management, anxiety and insomnia

      Conventional medicine:

          Ongoing fungal and upper respiratory infections (anti-fungals and anti-biotics)

      Psychotherapy / Clinical psychology:

         EMDR for PTSD and bereavement

         MBSR for stress reduction and pain management (through meditation)

         CBT for insomnia (sleep hygeine etc...)

         Couples therapy for conflict resolution

      I have just started or was about to attend:

         Pilates

         Tai Chi, Chi Gong

         A Chinese medicine specialist (accupressure and diet)

         An private specialist in allergy, urticaria and upper respiratory disorders

      Sorting out all of these problems seems to finally causing the urticaria to go into remission after five years.

  • re08763
    re08763 CU12

    Posted

    Hi

    the root cause of this is something in the food y ou eat. There is something in your diet which is causing this to trigger. At the same time, I can also say that an allergy test on you may come out negative for all panels. So now finding the culprit in your diet is the key challenge. To begin with start avoiding milk and switch to almond milk or so. Avoid tea, if possible. Avoid processed food which are high in sodium as well as fast food (pizza certainly). don't use high viscous moisturizers on your skin, which will stay like a wax on your skin. Use lighter ones. Use natural soaps for bathing to keep skin more intact.Soaps like dove and similar are nothing but chemicals-check their label fine print.

    do exercise and sweat it out, I know, it is painful in the beginning , but will certainly help. Don't buy into non-sense like -try to keep body cool by not exerting (you will only suffer more).  Sweat removes toxins which are already present in the body,  when you start, it will cause mast cell degeneration  (hives). But soon you will realize and experience that, if you exercise regularly and eat a proper diet, your condition will go away. Exercise or sweating out initially is the only way to remove those allergens those are already present. 

    Most of the medicines (anti histamines) which are mentioned in the post are only treating  symptoms (hives are manifestation of some other disorder inside the body) and those medicines cannot  be continued for ever. In most cases, it won't work. 

    I am certain that you should be fine with the  steps mentioned above. 

    • buffy09054
      buffy09054 re08763

      Posted

      I agree that the cause for hives in most cases us food, but also medications. In my case we found that the antihistamines were causing my urticaria turned urticarial vasculitis. My story was long and frustrating. It took months to fully get the antihistamines out if my system as my metabolism was slowed by other meds such as prednisone . If anyone here can say they started getting hives any time after you started taking a new medication, there's a good chance that could be your problem.
    • desmond01416
      desmond01416 buffy09054

      Posted

      I have found what you both said to be true. Immunologist kept insisting on anti-histamines for me at high dose. I know that works for many people. But for me, it did nothing or made things even worse.

      Definitely diet is a key part, no matter what some doctors say. Stopping eating gluten, caffeine, alcohol, sugar and processed food and that fixed more than 50% of the flare ups.

      Some people are genetically sensitive to things like caffeine. It effects their sleep quality and metabolism more than others. One way of knowing without testing is by noting how much caffeine (and chocolate) make you sweat or get tremors.

      Alcohol really affects sleep quality too. Some people mistake being in a mild stupor with real sleep smile

  • ann09075
    ann09075 CU12

    Posted

    Hi. I have suffered from chronic urticaria for 15 years. I recently went to visit an Allergist and Rheumatologist that confirmed it is autoimmune related. She put me on the same medicines as my mother who has rheumatoid arthritis - methotrexate. Eventually I will start plaquenil which is an ant malefic drug. By the way I have no allergies, no medical issues other than hives that come and stay for many many months. I was only able to keep the hives down with prednisone and that has really hurt me more. I wish you luck but really it's autoimmune related.

    • barbie79838
      barbie79838 ann09075

      Posted

      Ann, Before I realized what was causing my Colonergic Urticaria at 55 I suffered off and on with very bad joint pain, swelling, bloating, chonic heart burn, blured vision, rosacia and with age it only got worse. Some days my third of fourth bite of food would become stuck  going down. The esophogitis pains would go on for hours. By 55 my ankles, knees and hips hurt so bad when I got out of bed in the morning I could hardly walk. I had allergy test and no food allergies showed even though there are three very common area fish that can kill me if I eat them.  Only through trial and era did I find I have a food allergy is protien. I do take Singulair for asthma, but when I elimited the gluten all my other symptoms went away. I feel like I've been rebuilt. Give it a two week try, you could be amazed.
  • barbie79838
    barbie79838 CU12

    Posted

    Hi, I feel your pain. I was diagnosed at 16 only because the schoool wouldn't allow me back till I found out why I kept passing out.  My reaction is so extreme one dermotoligest wanted to take me to a convention because I was the worse case she had ever seen. I can sneeze and hive. At other times no reaction to anything.  Look up exercise induced anaphalaxis. I see this site doesn't have spell check so I hope I spelled it right. It has only in the past few years has the connection been realized. I actually figured it out myself at 55 years of age. If that doesn't help let me know.  There's one other thing you could try.

     

  • 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..!!
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