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THERE HAS TO BE A CAUSE OF URTICARIA ...

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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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  • Mariezz
    Mariezz gracIe53

    Posted

    The constant itching (and burning) is miserable - I know as I've suffered.  Unfortunately, it seems many things can cause it.  Being hypothyroid is one - if your TSH reading is above 3.0 and you have other symptoms consistent with hypothyroidism, this is something to pursue (go to the American Association of Clinical Endocrinologists & read their guidelines for treating hypothyroidism - many physicians tell you you *don't* have thyroid issues if your TSH is < 4.5, but that is an outdated view).  go to uptodate com and read their summary of urticaria; there is also a good summary in the journal skin therapy called "chronic uriticaria and autoimmunity" by fraser and robertson (2013) http://www.skintherapyletter.com/2013/18.7/2.html about 40% of chronic idiopathic urticarias seem to be linked to thyroid disorders.

    if you're on birth control pills/patches/nuvaring, this also may be causing it, even if you used them successfully without developing the urticaria.  people on the 2nd generation birth control (yas/yasmine/nuvaring) may be more likely to develop urticaria (based on anecdotal reports).  it may take at least several months of being off the birth control for the urticaria to die down.

    some people who have used antihistamines for other allergies have reported that they have developed an itch when they don't use the antihistamine and have to wean themselves very slowly off the antihistamine.  if you developed the urticaria only after using antihistamines, then this is a possibility. 

    there unfortunately are plenty of other causal factors. lupus (an autoimmune disorder) can have symptoms that include urticaria. celiac disease/gluten sensitivity may cause an itching - it's not clear to me that this is the same as the hives that comes with urticaria, but it's something to think about (an elimination diet can be followed without a doctor's prescription to see if this seems likely).

    also unfortunately, some people never figure out what causes it and it never goes away.  the best you can do is educate yourself (and be careful because there is plenty of nonsense on the internet, too) and then, consult with your physician (unfortunately, many physicians are not very receptive to suggestions from patients, so if your physician isn't, you might want to look for another).  4.5,="" but="" that="" is="" an="" outdated="" view). ="" go="" to="" uptodate="" com="" and="" read="" their="" summary="" of="" urticaria;="" there="" is="" also="" a="" good="" summary="" in="" the="" journal="" skin="" therapy="" called="" "chronic="" uriticaria="" and="" autoimmunity"="" by="" fraser="" and="" robertson="" (2013)="" [url=http://www.skintherapyletter.com/2013/18.7/2.html=""]http://www.skintherapyletter.com/2013/18.7/2.html=""[/url]; about="" 40%="" of="" chronic="" idiopathic="" urticarias="" seem="" to="" be="" linked="" to="" thyroid="" disorders.="" if="" you're="" on="" birth="" control="" pills/patches/nuvaring,="" this="" also="" may="" be="" causing="" it,="" even="" if="" you="" used="" them="" successfully="" without="" developing="" the="" urticaria. ="" people="" on="" the="" 2nd="" generation="" birth="" control="" (yas/yasmine/nuvaring)="" may="" be="" more="" likely="" to="" develop="" urticaria="" (based="" on="" anecdotal="" reports). ="" it="" may="" take="" at="" least="" several="" months="" of="" being="" off="" the="" birth="" control="" for="" the="" urticaria="" to="" die="" down.="" some="" people="" who="" have="" used="" antihistamines="" for="" other="" allergies="" have="" reported="" that="" they="" have="" developed="" an="" itch="" when="" they="" don't="" use="" the="" antihistamine="" and="" have="" to="" wean="" themselves="" very="" slowly="" off="" the="" antihistamine. ="" if="" you="" developed="" the="" urticaria="" only="" after="" using="" antihistamines,="" then="" this="" is="" a="" possibility. ="" there="" unfortunately="" are="" plenty="" of="" other="" causal="" factors.="" lupus="" (an="" autoimmune="" disorder)="" can="" have="" symptoms="" that="" include="" urticaria.="" celiac="" disease/gluten="" sensitivity="" may="" cause="" an="" itching="" -="" it's="" not="" clear="" to="" me="" that="" this="" is="" the="" same="" as="" the="" hives="" that="" comes="" with="" urticaria,="" but="" it's="" something="" to="" think="" about="" (an="" elimination="" diet="" can="" be="" followed="" without="" a="" doctor's="" prescription="" to="" see="" if="" this="" seems="" likely).="" also="" unfortunately,="" some="" people="" never="" figure="" out="" what="" causes="" it="" and="" it="" never="" goes="" away. ="" the="" best="" you="" can="" do="" is="" educate="" yourself="" (and="" be="" careful="" because="" there="" is="" plenty="" of="" nonsense="" on="" the="" internet,="" too)="" and="" then,="" consult="" with="" your="" physician="" (unfortunately,="" many="" physicians="" are="" not="" very="" receptive="" to="" suggestions="" from="" patients,="" so="" if="" your="" physician="" isn't,="" you="" might="" want="" to="" look="" for="">http://www.skintherapyletter.com/2013/18.7/2.html about 40% of chronic idiopathic urticarias seem to be linked to thyroid disorders.

    if you're on birth control pills/patches/nuvaring, this also may be causing it, even if you used them successfully without developing the urticaria.  people on the 2nd generation birth control (yas/yasmine/nuvaring) may be more likely to develop urticaria (based on anecdotal reports).  it may take at least several months of being off the birth control for the urticaria to die down.

    some people who have used antihistamines for other allergies have reported that they have developed an itch when they don't use the antihistamine and have to wean themselves very slowly off the antihistamine.  if you developed the urticaria only after using antihistamines, then this is a possibility. 

    there unfortunately are plenty of other causal factors. lupus (an autoimmune disorder) can have symptoms that include urticaria. celiac disease/gluten sensitivity may cause an itching - it's not clear to me that this is the same as the hives that comes with urticaria, but it's something to think about (an elimination diet can be followed without a doctor's prescription to see if this seems likely).

    also unfortunately, some people never figure out what causes it and it never goes away.  the best you can do is educate yourself (and be careful because there is plenty of nonsense on the internet, too) and then, consult with your physician (unfortunately, many physicians are not very receptive to suggestions from patients, so if your physician isn't, you might want to look for another). >

    • jasper09125
      jasper09125 Mariezz

      Posted

      Hi Mariezz

      I have read all the above postings and I can only tell you about my own experience and what I have done about it.

      I am from ''way Down Under'' - that is NZ.   My GP - who is a 'young' lady practitioner with a very high competency level.   I will follow her wherever she goes.   She had to go away on a course which took her out of the practice for about 2 months.   Before she left she dropped me an e-mail to inform me of her movements, but at the same time recomended that I read up about Urticaria.   It was the iching that drove me up the wall.   However, I developed the rash in my upper arms and it was red and inflamed.

      Earlier in my treatment she prescribed a stronger antihystamine tablet and  a 'Non-ionic Cream'   I am not mentioning the names of the products because the same product sells under different names in different countries.   I have a dietician who takes care of my food intake because I also have severe swallowing problems due to previous oral surgery.   My own approach was to monitor the GI of everything I consume and try to stick to the lowest GI levels.   So, I am suggestion that you also watch what you consume.   Secondly, I coated my entire body at least once a day with the 'non-ionic' cream which re-hydrates my body and soothes the itching.

      Well, GP is back and I saw her today.   She could not believe what she saw.  Her diagnosis as well as her prognosis was obviously spot-on.

      I will continue along this course and just keep myself as comfortable as I can.   

      Hoping my input will assist others in finding comfort

      Jasper

  • sharky
    sharky gracIe53

    Posted

    I have had 3 bouts of urticaria in the past 3 and a half years the first lasted 8 month the second lasted 6 week and the third has lasted 7 week and counting. The worst time I had it was the first time and everyone who has the itchy burning sensation of urticaria can appreciate how life controlling it can be.

    The first time I had urticaria I could tell I was going to get a bad episode because I would develop chest pains then 30 minutes later I would break out badly with the usual rash has anyone experienced this before?

    When I get urticaria now I can usually tell beforehand because my toilet habits change, I have found that I don’t frequently go to the toilet enough to defecate has anyone experienced the same problem? Also I develop bags under the eyes and also notice that I shed skin a lot more than usual I can usually tell this from taking my socks off and noticing dead skin inside the sock around the ankle areas but usually this effects all of the body as well, has any one had the same issues as me?

    I often wonder what could cause a disease  like this and often wonder if it could be due to some kind of an insect bite that has the same character of infection similar to malaria from a mosquito, does anyone else have this kind of theory and could something like that cause this recurring urticaria in human beings.

    • snissa
      snissa sharky

      Posted

      Hi Sharky - I have had hives now for about 7 weeks but i actually think they started a few weeks before that mildly and I didn't realize what was going on.  The reason i'm writing you though - is I went into anaphalytic shock from an ant bite - I then tested negative to fire ant allergy - long story short we figured out i'm allergic to "Asian Needle Ants."   I don't know how it relates but I have essentially been the perfect picture of health until then.  THEN the other thing that strikes a chord about your post is i've been having chest pains - my heart now at times skips a beat.  I can feel it and they now have it on an EKG - tomorrow i'm going in for a stress test.  I have had blood work done and I have no other issues - wild.   I also have bags under my eyes worse than i used too.  Anyway - I have no firm theories yet.  I think i'm going to try the paleo restriction died for 30 days and then add things in i'm starting to pin point down dairy and wheat - it seems like I might flare up for both - BUT WHY - I think it may be the toxin from the ant , that has led to the problems in me but its all my very own theory with no backing .  Also this ant is so new to our area there is NO research on it. i'm in US.  
    • sharky
      sharky snissa

      Posted

      Hi snissa,

      I usually found out the first time I had cu that I had bad flare-ups about 30 minutes after the chest pains so that gave me good warning to what was coming. I also had all the blood tests chest xrays and did the usual spell on the tread mill whilst being monitored for heart beat and blood pressure. The total outcome for all of these tests was a big fat zero so good luck as far as you are concerned.

      There are several other things that I also noticed when I get cu, one being the longer I have it the paler my normal skin looks, it is as if I have a reduced amount of red blood cells in my body.  

      I also wonder if this could be a disease due to a deep rooted fungal infection of some sort that totally unbalances the body’s natural rhythm.

      At the moment I’m on my third bout of cu and I have had this for 11 week but I’m feeling as though I’m reaching the end of this spell and I can feel myself getting better.

      I hope you get better soon and please keep me posted on how you’re doing so good luck snissa.      

  • GPhome
    GPhome gracIe53

    Posted

    Have you looked In to a possible mast cell activation disorder, there are papers online by a dr afrin in the usa that describe the wide range of symptoms which seem to encompass many of yours and indeed the other commentators.

    regads

    gawain

     

  • lyn75660
    lyn75660 gracIe53

    Posted

    Hi everyone

    I'm glad to be able to share what I've discovered about hives. It is pretty much caused by an imbalance of histamines in your body. Stress can really tip the balance, as can a very poor diet.

    You can help yourself by researching a list of low histamine foods and eat those and avoid foods/drinks which are high in histamines. I didn't deliberately experiment on myself, but when I did ignore my knowledge of what I knew to be high histamine foods, and had an overdose of it, I paid dearly for it that same evening, night and next morning. I personally don't believe in resorting to drugs in the initial instance and have toughed it out for several months and am glad to have worked out how to get it under control. It will take discipline, but I'm grateful I do have hives as my health monitor now. It pretty much tells me when I'm doing something wrong to my body and keeps me on a tight rein.

    I really hope this helps the rest of you find some comfort and rest. I am also hoping that over time, my body will recover fully from hives. Don't freak out over it as you'll just stress yourself out and make it worse. Try to have a positive attitude towards it. Take care, make those changes to your life which are necessary to minimise stress and histamine intake, and get better soon!

    • michaela99267
      michaela99267 lyn75660

      Posted

      Hi lynn mine was caused by stress , and has been one hell of a year.Ive tried mean green juice to build my immune system up, akaline drops, antihistimines, steriods, wil look into food with histamines , will give anything a go. michaela
  • lags
    lags gracIe53

    Posted

    Hi everyone,

    I have just returned from the allergy clinic at the local hospital where I was hoping for a magic fix to this problem (especially as they advertise themselves as leaders in the field of allergy treatment) but, alas, I was only told what I had already found out myself by looking on the internet. In my case I know the cause of my chronic urticaria - an intolerance to salicylates.  

    Several years ago I took an aspirin (which I have been happily taking without any debilitating effect up until that point) and, over the following hour, came up with huge itchy lumps on my scalp and ears, followed by my eyes and lips swelling up.  Since then I have had several bouts of urticaria lasting 1 - 4 days, but as I had did not take any aspirin at the time I did not think they were linked.  However, 3 months ago I picked up a virus which laid me low for a few days.  Shortly afterwards I started to get hives from head to toe which have persisted ever since.  I have kept a food diary (which I highly recommend) and noticed that I was getting much worse after I had consumed things like tea, orange juice, olives and red wine.  I researched this on the web and was surprised to find out that these foods/drinks are very high in salicylate - the key constituent of aspirin.

    The specialist in the allergy clinic gave the a copy of the NHS leaflet on 'avoiding high salicylate foods', although I already had a much better one I found on the internet and I have found that I am much better when sticking to a med-low salicylate diet combined with 360mg fenofexadine daily (although the pills make me feel lethargic and sleepy).  The real downside however is that the diet is boring in the extreme, with most fruit and vegetables forbidden and treats such as chocolate and wine banned. However the worst aspect of this diet is that my lifetime's ambition of travelling across asia (which was planned for next year) is on hold due to the fact that the worst foods for salicylate intolerance are spices and flavourings!

    I am going to try the automimmune paleo diet to see if that a) has a positive effect and b) is more appealing than the low salicylate diet.

    Either way, I hope that I can find a way to manage this problem and still travel, as the best medical adivce I have had is that this can clear up in 3 - 6 months and the worst, that I can have it for more than 10 years!

    If anyone can advise me on tolerating asian food whilst controlling hives I would be extremely grateful.

    Emis Moderator comment: I have removed the links as they were to sites unsuitable for inclusion in the forums.

    • MyGingercat
      MyGingercat lags

      Posted

      Lags, I live in Thailand and I have had CIU for about 7 months now. I put myself on the AIP (Autoimune protocol)/Paleo diet and have imprved a lot. However it has been very difficult. Apparently Autoimmune disease is rare in SE asia so Paleo is pretty much unheard of not certainly not cared about. Grass-fed beef is impossible unless you live in Bangkok. Reange free chickens are unkown, unless you have a farmer friend (I don't). I don't know many of the names of veggies nor do I speak the language adequately. Compared to the US (where I'm from) choices are fewer. I have to do cooking from scratch 100% of the time using the basic stuff from the markets. I would not trust restaurants, be they Thai or "farang".  Too many things I shouldn't have, like soy, MSG,rice, noodles, sugar, etc, etc.

      I am hoping to travel to Spain next spring, but don't know how I will eat - I am used to eating out of grocery stores when I travel - no restaurants.Guess it will fruits and raw veggies  Maybe we will better by then. :-)

  • marsha66275
    marsha66275 gracIe53

    Posted

    I live in Washington state, USA and last fall I got bit by something in the woods while I was hiking.  Tried lots of things but knew the doctors didn't have a clue what to treat me with.  I went to my naturapath and she put me on some thing to build up my immune system and gave me a sheet of paper that said what I should eat and not eat.  Months later it cleared up but still have flare ups when I eat chocolate, tomatoes or other non tolerant foods.  Truly what has helped me is GOD showing me how to eat.  I juice a lot of vegetables and fruit and eat them too.  Try not to eat processed foods or too much animal fat. 

    Hope this helps someone.  I know how miserable it can be.  It's humiliating and stress makes it worse.  It's so uncomfortable to live with.  Be desperate enough to try the healthy alternatives!  Drugs don't work.

    Marsha

  • lynn_12133
    lynn_12133 gracIe53

    Posted

    I hope you are still checking the updates and that this message finds you well. The symptoms that you are describing caught my attention. If you are able, please look up "Mastocytosis" and see how your symptoms compare. There are doctors in the UK that specialize in this and other mast cell disorders and there is treatment available. The steriods, epi-pens and fluids they gave you in A & E are part of the rescue treatment for this so I am not surprised that they brought you relief. There is also a support group of international patients on facebook if you are on there who can provide you with more education and assistance in finding  a doctor near you, if it turns out that this might be what you are suffering for.
  • laura20204
    laura20204 gracIe53

    Posted

    I've been suffering from the worst hives outbreak of my life and it's riduculous that I have to live with constant itching and hives because doctors slap idiopathic term on it. I 've eliminated all sources of food allergens and had cortisone shot last week.  I take safe vitamins, eat only organic, and don't have to consume anytyhing at all to have reaction. I use organic unscented bath and body products and eliminate exposure to toxins. This makes no sense There must be a cause. I have had 7 rounds of colon hydrotherapy and 5 rounds of infrared sauna and refuse to give up. I can't live like this.
    • wendy62425
      wendy62425 laura20204

      Posted

      Hi Laura

      How are you doing?  I hope your health has improved....please let us know.

      thank you

      Wendy

    • laura20204
      laura20204 wendy62425

      Posted

      Hi Wendy, I still get hives sometimes but I'm better than when I posted this. Had to get on prednisone but am off it now. I get 375 mg of xolair shots e/o week and have been doing that for 9 mo. I had skin patch tests done and learned I get eczema and or hives from everything but a few select products. When I get hives, I often don't know why but they only last hours instead of days thanks to Xolair. Thanks so much for following up and asking how I am! I hope you are well.
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