THERE HAS TO BE A CAUSE OF URTICARIA ...

Posted , 116 users are following.

I absolutely REFUSE to accept a diagnosis of 'Chronic Idiopathic Urticaria' which basically means the medical profession have yet to discover the cause. They NEED to get on with their research. This is a deeply FRUSTRATING, IRRITATING, SCARY, DISTRESSING, PHYSICALLY AND PSYCHOLIGALLY DEPRESSING condition and CIA diagnosis is just not good enough. And most of us CIU sufferers are the type of people who 'don't like to keep complaining', so we put up with the damned itching and also we're too EXHAUSTED with the condition to keep running to the doctor every few days.

GPs don't seem to know who to refer us to. We go for allergy tests, nothing is detected, we're put on antihistamines, they don't work. We go to dermatologists, same thing all over again, all tests are done to RULE OUT this and that, but never to RULE IN. In the UK, there are 'within normal limits' criteria for blood tests. What if you have a body that doesn't work alongside the 'norm'? Your overlooked.

I started with this CIU during a really persistent chest infection which wouldn't go away. I knew exactly where in my right lung the pest was living and yet my GP continually 'couldn't hear anything' with the stethoscope, but I could FEEL something not right. Then I had C reactive protein tests which showed and inflammation 'somewhere in my body' but they didn't know where. I KNEW WHERE.

I suffered with breathing problems and this stupid CIU for 10 months, ended up in A & E several times with angio-oedema and anaphylaxis, now carry an Epipen. The rash eventually subsided after almost a year, but not due to antihistamines because they didn't work, some even made it worse.

But my skin remained itchy all over. So I live with constant itching. Two months ago, the rash flared up, I still have it, been to my GP, given Atarax at first which made it worse. Went back, given Cetirizine 3 a day, Ranitidine one a day plus Monteleukast if that didn't work. Before I had the chance to even take that, I had to be rushed to A & E a few days ago because the rash was creeping up to my throat and head and I felt my tongue tingling and had a fat lip. Put on IV Piriton, steroids, sent home after 6 hours with a 5 day course of Prednisolone steroid tabs. Still had the rash but it went down and for ONE DAY I WAS TOTALLY ITCH FREE. BLISS.

But it's now back again and I'm feeling really desperate. I work in a psychiatric hospital, my job is stressful, I can't concentrate and can't afford to make mistakes in my work. I have no social life because I look like a cross between a leper and a lousy dog! And most days I just feel that life isn't worth living if I have to continue like this. In fact I don't WANT to live if I have to live with this. That's how bad this skin condition makes me feel. And that's what I'm going to tell my GP next week when I see her because they have to really sit up and take notice where this CIU is concerned and stop fobbing us off with 'it's not life threatening, it will pass, it will burn itself out eventually'.

Thanks to all the posters here for their contributions about what has or hasn't worked for them.

15 likes, 259 replies

259 Replies

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  • Posted

    I feel your pain ! I've been doing this for 16 years and still no known cause.... sad

  • Posted

    I know your anguish, pain and fustration. It didn't burn itself out with me.I'm going on my 5th year and agree with everything you've expressed. My face is all distorted and hived up as we speek. I've had to go on job interviews looking like this. In and out of hospitals myself. I go in with major hives and released the same. I'm going to try drinking/eating homemade Aloe Vera juice (I live in Florida, they grow large here) It's anti bacterial, anti fungal and just an awesome anciant healing plant, I need to read up some more on this plant but I'm hopefull from what I've read so far. If our bodies are sending out hystimine, there is some sort of infection somwhere in our bodies. cant wait for the doctors to figure it out. Let's go holistic! What the heck!  Would love your feedback!! Best of luck!

  • Posted

    I feel very sorry for you, but I don't believe there is a cure coming any time soon. I have suffered from this malady for over 40 years and now simply rely on daily medication to  control the condition.

  • Posted

    Hello I just seen this post after trying to do some research on my similar issue. Did you ever figure out what caused your hives? Did you ever find a cure? I'm going through this exact same thing as you and I am feeling the exact same way about life... Please help with any advice, please because I don't know what to do.

    Hope to hear from you soon,

    Krystal

    • Posted

      Mine were caused by a vitamin d deficiency. I have been hive free for 2 years since getting my vitamin d levels in a normal range. Considering if you have symptoms other than the hives may help you find a cause. I'm glad I kept searching for a cause for mine and didn't settle for taking antihistamines. I was miserable!

  • Posted

    Hello I just seen this post after trying to do some research on my similar issue. Did you ever figure out what caused your hives? Did you ever find a cure? I'm going through this exact same thing as you and I am feeling the exact same way about life... Please help with any advice, please because I don't know what to do.

    Hope to hear from you soon,

    Krystal

    • Posted

      Hi Krystal

      How long have you been suffering with the hives...have you been diagnosed with Urticaria?  Are you in the US?

      Wendy

       

  • Posted

    Hi Gracie

    i just came across your blog that was posted over a year ago......how are you now?  I suffered with CIU and finally found the right doctor.  Its our immune system.  Please advise how you are.

    wendy

    • Posted

      Hi Wendy

      You say it's your immune system ... what tests did you have done?

      I've been suffering for almost 3 years - no obvious cause and it's made me allergic to anti-histamine, cold medicines, ibuprofens etc so treatment is only when it's at its worst with Xolair injections. I'm seeing a dermatologist for this and I've asked about seeing an immuneologist but they say I don't need to / nothing they can do?

      Many thanks

      Hanneke

    • Posted

      Don't waste your time seeing a dermatologist. They are just going to say this that or another. Really I have been everywhere.

    • Posted

      Hi , I see you have suffered from this for a long time. Are you better now? Have you been tested for parasites or taken any kind of antibiotics
    • Posted

      Hi Luka

      Yes almost three years now.

      Whatever has caused this urticaria has made me allergic to antihistamines therefore I've tried various treatments (creams, steroids, monokalust - forgive the spelling!) yet nothing worked.

      Last summer my consultant put me on the Xolair course for 6 months which was amazing - not a hive in sight for 6 bliss months. But sadly they came back once off ... another 6 months back and forth with the hive score sheet and they've put me back on Xolair again!

      I've asked about seeing an immuneologist but I haven't had any luck there.

      I assume you're suffering with urticaria?

    • Posted

      Yes, I have suffered last year for over 9 months, but I am clear now. I just have posted my story, but it is waiting for moderation. I thought to come back and maybe help someone if they have similar stuff that I had. I don't know your whole story and what have you tested, but I know one thing doctors prescribe all these medicines to supress the symptoms and very rarely find the cause. I did so much research and saw numerous doctors until it came back to a simple thing. Blastocystis Hominis infection in the gut. 2 rounds of antibiotics cleared everything up. Have you ever had that tested? 

  • Posted

    Hi ive suffered this for over 12 yrs took every antihistamine going steroids and montelukusk too. Currently on fexofenadine and still it reacts at random used epipen few times too. Have had a few stomache problems too and thought was linked even thought i was allegic to my own sweat but dismissed. Get cold feet and hands too so dont know if related. There just seems to be no answers it affects everything iyou do, cant plan to do anything incase of an attack and works getting a p*ssed off although i have hid the extent of attacks with holidays. Theres got to be something to help

  • Posted

    That's how I was for nearly three years. I am currently mostly under control after doing the same as you plus UV treatment. The lumps would go down during the day and go mad at night plus horribly dry, itchy skin. The lumps happened to be still prominent one day when I had an appointment with the dermatologist who said 'Ah, Urticaria!' as I'd told them for years. He put me on fexofenadine, 2 twice a day (over 700 mg) and Ranitidine 180 twice a day plus Elocon ointment.

    I have also found none of the crreams prescribed for dermatitus work but Aveeno lotion really helps. I still have a few lumps most mornings if I eat sweet stuff or alcohol. I avoid man made fibre and tight clothing.

    Hope this helps

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