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
Loubylou65 gracIe53
Posted
I totally agree with you. I have suffered with severe chronic urticaria for over 20 years and have been told exactly the same thing!! My consultant told me that patients have ended their lives so how can they say it's not life threatening!! It is the most horrendous thing to live with, you are constantly exhausted due to no sleep. It affects work, relationships...everything!! I am now trying a low histamine diet which as we speak doesn't seem to be doing anything...it's nice to hear that someone else understands how horrible this condition really is and doctors really need to understand how bad it affects people living with this condition.
georgie73175 Loubylou65
Posted
antihistamines have helped me a great deal...doubling the dose many a time....going plant based has also made a big difference...much less inflammation from plants as opposed to animal proteins....and i also found a differencenow that i wash all my clotges in a mix of vinegar and bicarb of soda.. .at least when the itch comes on i know im not rubbing detergents into my skin as im towel drying etc
hope that helps someone
georgie
Bohrsmodel Loubylou65
Posted