THERE HAS TO BE A CAUSE OF URTICARIA ...

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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.

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  • Posted

    Hi, I have had the worst 6 months of my life due to an allergic reaction to something that has left me itching all over For months and constant spots and hives.. I have been on 50 mg of steroids and far to many anti histermines just allow me to keep the itch at bay and be able to work. I have put on 1 stone with fluid and have had a non existence social and personal life. My husband and I have researched remedies, purchased every cream and tried unsuccessfully until now to find something that helps. Early this week I took myself to bed with a bottle of whiskey because I had had enough of being swollen spotty and itchy with little or no help from the medical sector. But I can sy within 24 hours and a little help from a friend I have honestly found a cure or well at least a treatment. Please please try Emu oil plus! It is honestly the best thing in the world. If you apply all over it makes you feel odd for about 20 mins, really cold, but I absolutely promise you you will nt itch. It's pungent but it's amazing! I have not had an anti histermines for 48 hours! I was on 8 a dy of strong ones! If I could I would shout it fom the roof tops to help other sufferers! I ave bathed in everything down to detol trying to find a cure and ave visited the octor every week since June but that cream, wow honest,y, where m arms and body were full of spots scabs and hives have gone down 95%. I've even got my steroids down.its available on te Internet and available in different forms but if you want to try it get the Emu plus, it's around 10 pound but worth it's weight in gold. Let me know how you get on because after suffering from this horrendous condition with no help but masking of chemical drugs that never made it go just gave a slight control I want to get this crem out there to help other sufferers. Am I cured? I don't know but I do know, I've had more sleep in 2 days then te last 6 months!!
    • Posted

      Hello Sarah.

      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

    • Posted

      Hi Julie's,

      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 smile

      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

    • Posted

      Hi sarah nbsa q post u kz parang ganyan din case q..pwde u b me tulungan..dumadame n ung kati kati at minsan ung mga daliri q namamaga at nag nana..uminom aq ng antibiotic taz ung kati2x q umiinom aq ng prednisone at claritin prng wl nmn epkto.taz nagpatingin nrin aq s derma at allergologist wala rin nangyyri ngaun nppansin lalong dumadame...pls m2lungan u b me.
  • Posted

    Hi gracle53--

    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.

  • Posted

    Hello! I hope this can help people. I know many many people have been living with hives for decades. I also know that professionals say this is not an allergic reaction. I tend to disagree in my case. I have been suffering from severe hives for the past year and a half. It took a full year for me to track down the source. Yet I am still suffering from hives for a reason. Actually I do agree with professionals that it is not an allergic reaction from the air or any foods or household items you may have changed. I have never been allergic to anything other than poison ivy.

    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.

  • Posted

    I also had a rash and itching for several months. Then one night my lips and face swelled up after I had a bag of asian crisps. I looked at the ingredients and the one that stood out was e621 which is msg. This set me on an internet search and I found out about riborash which is like the hives I had. It is caused by flavour enhancers especially 635, 621 and 627. These enhancers are in just about all processed food including takeaway. I then just ate simple foods like meat with no gravies or marinades, fruit and veg and the rash cleared up within days. Its only when I dont follow or read ingredients that the itching comes back.Flavour enhancers are also called yeast extract, hvp, flavours and natural flavours.Soy sauce and promite and vegemite are also glutamates like msg.There is a great website called fedup that explains it in more detail. The worse things you can eat are flavoured chips (crisps) chicken salt, CC's, KFC, Arnotts shapes, pies etc, stock cubes, liquid stock and the list goes on Hope this helps I rarely take an antihistamine now omly if I know I will deliberately eating something with msg or flavour enhancer. P.S. I was not allergic to anything before this year I think FH is in more products.
    • Posted

      I've been suffering from severe hives on and off for about 10 years and have noticed that yeast is a trigger. Drinking real ale is a killer for example. Stress seems to be a major factor also, in fact when I'm busy working and my mind is occupied or on holiday I don't suffer from them at all!
  • Posted

    Google "riborash" and "fedup" website You may find you are allergic to msg and flavour enhancers like myself. They are known as 635, 621, 627, yeast extract, hvp, glutamates, flavours and natural flavours and are found in most processed foods such as pies, gravy chicken salt, flavoured crisps, savoury biscuits like shapes, marinated meats, sausages ,CC's, KFC, McDonalds, stock cubes, soy sauce, salad dressings, vegemite and promite and the list goes on. Fresh fruit and veg and meat, rice etc is the way to go. Read all labels and you'll notice a difference in days. Good luck. I never use to be allergic to any- thing but it seems to be in more foods than ever before.

  • Posted

    I know exactly what you are talking about and the fustration you feel. I have chronic urticaria and delayed pressure urticaria dpu. The delayed pressure urticaria is the worst to treat. I also know that your type is bad where it affects your throat etc. I have been on countless types of medication none have really worked. Montelukaust made me worse all antihistamines are crap cos they never work even using high dosages.  I have been on cyclosporin and prednisone. I had one day free of anything on the steroids that I announced it on facebook saying I was normal.  My friends thought I lost the plot. The only people who know what we are going through is us sufferers.

    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.

     

  • Posted

    since June I have had this urticaria my doctor first misdiagonised me and had the cheek to call it scabbies even tho it looked nothing like scabbies and no one else around me had caught it not even my child! So after weeks of worrying about scabbies I looked into stress rashes, as i've been going through alot and this looked exactly like mine, my body, my hands , my feet,covered in this itchy rash. So went back to doctors he finally agreed that its urticaria, so he tolsd me take 2 antihestimine citrizine, 1 in am 1 in pm, then a dose of steriods prednisole started on 8 a day, 7 a day & so on till 1 a day for 2 wks, but now my course has finished and bingo its coming up again. The steriods helped massively I only got little bits coming back, but now as i'm not on them its covering my body again, I'm still taking my citrizine tabs 2x aday. I'm gonna go back again to doctors all he keeps saying is can take up 12 months to clear and that I need to relax. Well its abit hard when lifes issues do flare up and then you've got the worry of this very annoying itchy rash which looks horrable, so how can you relax?? It is depressing me now what do I do  next in desperate need im 35yrs and going abroad for holiday in a few weeks dont want to suffer ith this.
    • Posted

      Antihistamines don't work.  I was eating them like sweets taking as much as 320mg a day. My gp nearly had a heart attack but I was advised by a specialist that it was ok. But unfortunately they don't work.  Steroids I found to be alright but these are not long term.  Ive been on various medications ie dapsone montelukaust ciclosporin etc to name a few. You may come across these at some point when treated but they may work for you but unfortunately they didn't work for me. The itching I had was unbearable and frenzied I was rubbing the area with stuff like brillo pads.  Crazy I know.  I found montelukaust made me worse. Some tablets exacerbate the situation.  I also suffer from delayed pressure urticaria which is harder to treat. It is exactly what it says on the tin. At the time of doing things not affected but as the day goes on whelks appear and my hands and feet swell. Its very distressing that I'm scared to socialise. Nobody understands you and think you are exaggerating or making it up. I have an identical twin sister and we both have it.

      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.

    • Posted

      this is all so depressing !! Ayda thank you for your reply will demand to see a specialist.

       

    • Posted

      Antihistamines do work for some people, at least to reduce the itching. They do for me.  Zyrtec (or its generic form) was best for me.
    • Posted

      I too have been suffering since June ... Been on 180mg fenofexadine but still gettin hives everyday on hands, arms  legs...some days just tiny red spots, other days large red welts. Not entirely sure what the fenofexadine are doing?

      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.

    • Posted

      On my first and worst episode of urticaria I too was put on fexofenadine but I soon realised that it was making the symptoms to a great extent worse and the only way to control it was with a mixture of antihistamines (chlorphenamine) which you can buy cheaply from Asda and prednisolone (steroid) 5mg prescribed by the doctor, even then there were times when the urticaria was extremely stubborn and just had to flare up massively for at least 24 hours. I too went to see a dermatologist on the NHS and had all the relevant tests what they give but nothing abnormal showed up and the dermatologist put me on a course of Dapsone tablets 150mg. Personally I don’t think this did much and the problem with taking the drug was that you had to go for a blood test every week which was a pain. Anyway after 8 month of this awful disease that literally controls your life and doesn’t allow you to plan for anything from one day to another, the urticaria must have run its course and things felt great again I was back to normal.

      Hope everything go’s well for you and don’t let this beat you down I know how it feels “good luck”.   

    • Posted

      Thank you for your reply Sharky... I'm just having a bad night after a bad day so it's got me down a little. To top it all off I think I have one now appearing on my neck where they haven't ventures before which I've been grateful of!

      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!

    • Posted

      Try b12MC. Its a chewab le b12 supplement. I was told to put it under my tongue and let it dissolve. I was advised to take up to 4000 mcg a day. After a couple weeks the hives were so very under control and much more tolerable. It helped ease the frustration until we finally figured out what was causing the hives. I dealt with chronic hives since summer of 2014. I didnt disregard any suggest. It took 5 doctors before i finally found a doctor that looked beyond allergic reaction. She tested me for lymes, autoimmune disorders, thyroid issues, horomones, etc. I took every suggestion and tried everything. There was no reason to disregard anyone elses experiences and what worked for them. I even found acupuncture helped ease up the hives. Any relief was better than none.
    • Posted

      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.

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