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
sarah32693
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JulesyBaby sarah32693
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Thank you so much for posting this information. I have had CIU since before Christmas (Dec 2014), but it really flared up a few weeks ago. Antihistamines were doing nothing, and the worst thing was not being able to sleep. It was driving me nuts, but I tried the Emu Oil Plus (from Emu Oil Well) and I too got a good night's sleep for the first time in weeks. It is not a "cure" for urticaria, and it does not always work, but it is the best thing I have found to control the burning and itching. Yes, it has a really strong smell (moth balls) which can get mildly nauseating (don't think it was designed to be used as extensively as I do) - but really - if it comes down to the pugent whiff or the pain, I know what I would chose - every time.
Jules
sarah32693 JulesyBaby
Posted
i hope things are settled for you at the moment.
im almost there now, probably 5% away from being free of it and some days there's nothing. I'm on no medication anymore and I get to sleep
i know there is no reason and no cure for this but I do be
ieve a big cause of mine has been emotional. I didn't realise at the time but I was living a life I wasn't truly happy with. As I started to recognise my emotions and face them the urticaria started to subside. I also believe a medication I took for a brief while contributed.
i know this is not a reason for everyone but it seems to have been mine. I can honestly say I have never experienced something so horrendous in my life and my heart goes out to everyone who is still suffering. This illness needs to be understood more and the doctors need to take some time to listen to how crippling it really is. It's no life to suffer with it.
im not sure if anyone has ever started a petition on this to present to a medical board, I def think it's an avenue to look at.
wishing you an itch free life x
vangie_lou86708 sarah32693
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andie32716 gracIe53
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I hope you are still checking responses to your post, as I registered just to answer you. I have had dermatographic urticaria almost my entire life (since I was ten) and when I was young, they told me "someday it will go away." Not the case. 25 years later, I still have this condition. Unlike in your case, antihistamines do tend to work for me but they only cover the symptoms, which come raging back the next day. However, in the last year I have found a diet that has reduced by antihistamine intake from 6 pills a day to 1. It is called "autoimmune paleo" and I highly recommend you look into it. After testing with autoimmune paleo's elimination diet, I realized that this Urticaria is 75% my body's reaction to almost all foods except clean meats and vegetables (I tolerate fruit but not a huge amount). It seems that grains, sugar and lactose are the biggest culprits. The other 25% of my symptoms have not seen improvement, so I consider them to be environmental or genetic factors. This could be the case for you, or even different foods--it has been trial and error for about a year. Urticaria and dermatographism are autoimmune responses, though no doctor will tell you that.
I have done tons of research into why this issue sprang up for me when I was 10 years old and the two things I have in common with several other sufferers are: 1. I had a high amount of antibiotics as a child in response to a diagnosis of facial cellulitis (a form of menangitis) and 2. I was given soy formula.
I truly hope you find some relief. I know how hard this condition can be, especially when it feels like doctors are not taking you seriously or trying to come up with a solution. I wish you the best of luck.
kayelle gracIe53
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Suddenly I was breaking out in huge welps! They would start out as a simple dot or spot that looked and itched like a mosquito bite. Next thing you know I had a patch that covered most of my thighs... and it moved onto my entire back... to my feet... etc etc. It seems most of the time if one foot is affected, so was the other, if one arm was, so was the other... Note, it has, but rarely hit my face, above my neck or my airways... often the palms of my hands, torso, legs, feet, arms, hips... but generally both sides of my body when it hits one side.
It was not until we bought this beautiful hay to feed our donkeys. Any ordinary hay, such as our own or hay from a neighbor, did no harm. I believe this hay was fertilized with some chemical. I don't think it's the hay itself, it's the chemical they use on it. The hay was too perfect. Once I got my husband to feed the hay, the hives subsided somewhat, yet I still got some hives because I still do his laundry which had contact and I have cats and dogs who are in our barn and I still feed and pet my donkeys, therefore I still have contact... and there is residual hay on the floor of our barn. This is the second year with this hay and as soon as I finish these last 2 bales, we will rake out the barn and buy no more of that beautiful "perfect" hay.
How I treat these hives... I have been using a shelf brand with the active ingredient "Loratadine" 24-hour non-drowsy allergy medicine. It relieves my hives in about an hour for about 24 hours... however the long term effect I am receiving nowadays is my ears ringing rather loudly.
I know this is not a cure for those of you who have chronic hives, but perhaps it helps those of you who have only been suffering for a few months... or perhaps it will give some of you a possible cause that you have not thought of because you could not pinpoint it.
Perhaps once scrape the floor of our barn I will still have hives... but I did not develope these hives until I was 53 years old... I hope within a month or two, I will find the end to them.
I hope this can help someone... and find relief for you too.
Julie002009 gracIe53
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ministergerry Julie002009
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Julie002009 gracIe53
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ayda gracIe53
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I found it difficult to hold down my job as a civil servant taking loads of random days off sick. I am sure they thought I was making it up as they don't understand. Luckily for me a voluntary redundancy came up and I have taken it as I would have been sacked. Not because I am rubbish at my job but because of sickness.
I barely sleep properly because of my symptoms and my social life is at a more months me minimum. My leaving do at work is a good example because my feet was itching do much and staring to swell up I had to leave my own do like cinderella.
I am a strong independent person and I have broken down myself because of this. I really don't want to live the rest of my life like this either. Yes I agree there is not enough research out there about this and I am all too familiar with the feeling of being fobbed off all the time. And made to feel like you are lying or making it all up because most people don't understand this really uncomfortable frustrating illness.
Apart from this forum I don't know what is out there for sufferers. And we can't diagnose ourselves only talk about our experiences. We need more than this we need to demand that things move on for us and there is more help for us.
michaela99267 gracIe53
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ayda michaela99267
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Long term you need your doctor to refer you to a specialist. Allergy tests are personally a waste of time. But a good healthy diet is essential especially vitamin D.
It affects people differently because there are so many types of urticaria. It does burn itself out for some and others suffer many years if this. I'm just passing on what I know.
There is not much research done on this and the medical profession don't even know what causes it. I know it's easier said than done by stress does not help. I know it's a catch 22 situation.
I'm sorry I can't give you any other solace or advice that you was hoping for and I don't know how you can look after yourself while on your holiday. I do hope you don't suffer too much and like I said demand to see a consultant/specialist from cutaneous clinic. The doctors cannot help with this.
michaela99267 ayda
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Mariezz ayda
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hanneke54158 michaela99267
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ive had blood tests and allergy blood tests all of which came back clear. I have an appointment with an nHS dermatologist on Oct 31 but I really don't know what a dermatologist can do as I'm certain it's something internal. I recently had a holiday in Spain and that week was the worst I've had and I have no idea why. Every morning my legs, hands and arms would be completely covered in large bright red welts. It was awful and ruined the holiday. Antihistamines weren't doing anything.
people don't understand how depressing this is and just say stop worrying about it ... But how can you stop worrying when you don't know why you're getting them and you have no idea what they will be like day by day.
i just want to cry and hide away ... So fed up with it now.
sharky hanneke54158
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Hope everything go’s well for you and don’t let this beat you down I know how it feels “good luck”.
hanneke54158 sharky
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I don't know about you but I find myself avoiding any foods that people say are high in histimine even though I have no food allergies... Getting paranoid that I can somehow make them worse!
I stopped taking the fenofexadine when they got bad on holiday at the end of September and am taking piriteze now... They haven't got any worse since stopping the feno, but they haven't got any better either!
I'm glad yours up and left you after 8 months and can only hope mine do the same. To think that this could go on for years is a rather depressing thought and I feel for those that have suffered that long!
becky77657 hanneke54158
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Smarty10 becky77657
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Hi I know what you mean you would try anything ,I also got tested first about 10 years ago for thyroid and other things and tested again recently all came back normal it is very frustrating. I have been on b12 for a little while it does help s little. .I also take sea kelp and quercetin blend there work as a natural mast cell blocker. It doesn't go away but makes life more barrable.you could also try a spray I got from America called oxyhives it works if I still take a atarax it is expensive but it is worth ago. It doesn't work for everyone but it is all natural which is good. I found out recently I can't eat processed meats and foods and also any form of sweeteners. Hope this helps don't worry you're not alone.