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THERE HAS TO BE A CAUSE OF URTICARIA ...

Posted , 116 users are following.

gracIe53
gracIe53

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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  • kelly61037
    kelly61037 gracIe53

    Posted

    Hi Gracle53,

    Do you still have this illness as discussed above?

    Kind Regards 

    Kel

  • kathy519
    kathy519 gracIe53

    Posted

    I have had horrible hives off and on for 6 years.Have you been cured? Medical doctors do nothing so exhausted.
    • Smarty10
      Smarty10 kathy519

      Posted

      Hi iam new to this . I have had urticaria for 35 years and counting. I have nether stop itching in all that time it is really bad. In the early days I used to get rashes and hives but now not so bad just itching everywhere it has never gone away I have been on every tablet none to man nothing helps . Diets don't help some nitrates can make it worse like processt foods. Iam now trying a new thing from the states it is called oxyhives. Not been on it very long but it sometimes takes the edge of it. It is hard and you feel like crying sometimes but stick in there I have had it nearly two all my life I wish There was a cute but there isn't. I am still looking I wish I could be like some people and only had it for a short time. My mum had it her dad had it and now my son has it. Keep smiling.

  • betsydee45
    betsydee45 gracIe53

    Posted

    I am in total agreement with you. I keep thinking there HAS to be something else going on. I started to get myself checked out doing routine things like a mammogram, and colonoscopy. Because why are they not looking internally? My labs are not normal showing infection somewhere, but we dont know where. I have started on Xolair shots, I have had two rounds of it. No cure yet. I am told it may take three or four times. The ONLY thing that seems to calm down the CIU is prednisone. I am on and off of it alot. Currently I have had CIU now for a year. It is life debilitating. When it really flares up it is unbearable. My sores have become borderline impetigo according to my allergist. So I get put on antibiotics. I feel most days like I can hardly work like you are saying. I have to work full time, I am also in health care. Some days I just want to give up and quit my job and stay in bed. I hope they are doing more research on this disease. No one except those of us who suffer know what its like to live with it and how life changing it really is. I am truly exhausted most of the time.  I was looking to see if there are any research studies that I could volunteer for. Have you come accross any? Best of luck with everything, and remember we are good people we are worth a lot  and life is worth living even though this is a horrible condition to put up with. Keep your head up and keep fighting. smile
  • becky77657
    becky77657 gracIe53

    Posted

    Do any of you have silver tooth fillings? Something to seriously consider if you do. I dealt with chronic hives for 4 years. Had all kinds of blood tests done. We found b12mc gave me relief. Sometimes the hives would disappear for good amounts of time. I switched dentists. He immediately said the 7 silver fillings i had shoukdve been taken out 15 years ago. They were 25 years old. Come to find out i had mercury poisoning from the fillings. Now that they are out I am on a heavy metals detox. Rarely taking B12 and benadryl. Evertime the dentist took one of the silver fillings out, i would have. spike of bad hives for a few days. doctor said that would happen. I had a couple cracks and a couple bad cavities under these silver fillings. It may not be the answer for all of you but it may help some of you. At least try the B12mc. I was taking 4000 mcg a day. Hope this help someone!

    • Smarty10
      Smarty10 becky77657

      Posted

      Hi thanks for info I found out years ok about fillings there aren't harmful unless you have a mercury allergy which is only 3% of the population. There is mercury in water and fish and it is all around us. You can have a mercury test done through your urine but it's not as easy to find out if you are allergic to it . As you know I have had this for 30 years and I have had alot of time to find out something's NHS doesn't help because there don't know , like the old saying you are what you eat ,some foods aren't good like nitrates certain e numbers and some fruits and vegetables and some dairy. With all the food additives it is really hard to find what triggers it. Like I say it has taken me 35 years to find out that's my triggers are sweeteners and nitrates . I take all sorts of vitamins with a little help and I take atarax and raintidine every day it takes the edge of it. The only way is to do it yourself and try and find the trigger. For me iam stuck with it for the rest of my life , it is past through the family as my mum had it and her dad me and now my 14 year old son. Hope this helps.

    • becky77657
      becky77657 Smarty10

      Posted

      They are harmful over years..especially if you have any cavities or cracks as it then slowly goes into the bloodstream. Mercury is dangerous. I had several silver fillings. My new dentist said immediately thst they hsd to come out. They font know what is going on underneath them. Cause they cant xray through metal. I then spoke to my doctor and she said exact same thing. Id get one or two removed and break out real bad for a few days then the hives would be 97% gone. The doctor told me that everytime i would get one removed to expect a spike of symptoms. It is controversial but think about just how dangerous mercury is. Look up the symptoms. I h ad many symptoms, more than just hives. I feel more energetic now. I constantly had sinus issues and no longer do. Im sleeping better. Id get hot flashes\flushing and that has all stopped. My digestion is better. It doesnt hurt to look into it. For me they never found an answer and were baffled. I even had one doctor tell me she doesnt know and there is nothing more she can do for me. I tried natural medicine and acupuncture. Im not saying its answer for all but it was the answer for me. Look into it.
    • becky77657
      becky77657 Smarty10

      Posted

      Also...i dealt with hives for almost four years. I was down to only eating carrots, celery and water. I was still breaking out. We are subsitence people. So we eat what we grow and harvest. We rarely consume food with preservatives.

      One thing i will mention... My doctor also said menopause or perimenopause can cause a histamine intolerance. There is nothing you can do if thats the case. You just have to deal with it, unfortunately. She said it often gets overlooked in cases of chronic hives.

  • mikaail28
    mikaail28 gracIe53

    Posted

    Hello

    I'm extremely empathetic to your situation as I also suffer from CIU unfortuantely. I was just wondering if your condition has gone away by now as it's been 4 years since you made this post. I'm trying to gage how long CIU stays for on average as all health care services seem to be useless.

    Thank you.

    • Smarty10
      Smarty10 mikaail28

      Posted

      Hi the quick answer is not it hasn't gone it has been 35 years and counting. What about you how are you doing ?

  • georgie73175
    georgie73175 gracIe53

    Posted

    Hi there

    ..i know this might sound drastic but have you considered going plant based?....i had chronic urticaria but its vastly improved since removing all animal products and oils from my diet a year ago....actually its been amazing to me all the improvements that have happened

    ...csn i suggest you check out dr john mcdougalls web site....personally i would even try and contact him directly.....his website has great info on it..

    His book is called The Starch Solution.....

    Good luck...hope it helps you like it did me

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