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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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  • crydtal40489
    crydtal40489 gracIe53

    Posted

    Hi. I have this very same issue. My family doctor gave me different pills to try grr they would work for me but not for long. I finally I went to the hospital emergency department and asked for more helpsmile yay the doctor referred me to a specialist. The specialist heard me out and ordered a page full of blood/urine/stool samples, which my protein and ketones came back hi and my creatinine came back low. sad I believe all this itching and hives day in and day out is your body telling you to get fully checked before health issues become irreversible. I am still itchy as I have just recieved 3/4 of my lab result on line the rest I am assuming will take longer to test. I hop this helps.
    • lorraine34338
      lorraine34338 crydtal40489

      Posted

      Hi you are so right the body's immune system can go haywire if you have been ill or have a medical problem or if you are on meds that can spark it off.  A full investigation of your health is the right way to determine if your immune system is compromised. I had a problem with my stomach and once I had information on how to deal with it my urticaria, along with the meds I was on seems to have done the trick. For now anyway!!
    • norman32101
      norman32101 lorraine34338

      Posted

      I think sometimes infection with H pylori  can give hives - Google this . Then if the H pylori bug is eradicated from the stomach by an antibiotic cocktail the hives go . Infection with gut worms from abroad can also give you reactions and can be eradicated . 
  • ali2697
    ali2697 gracIe53

    Posted

    I have Urticaria back after 8 year & today Angiodema I have taken Ceterizine for 8 year then all of a sudden hives worse by the day, changed to fexofenodine took a reaction to it, doctor put me back on Ceterizine! Won't refer me & wont investigate if anything else am not happy and now wonder if j should just take more ceterizine ?
    • crydtal40489
      crydtal40489 ali2697

      Posted

      My doctor did not refer me as well, he just kept giving me different pills to try. I then went the the hospital emergency room and that is when the emergency doctor referred me to a specialist. I have had hives for 8 months straight. It's so hard to live with a uncontrollable itch.. Read my other post. Good luck.
    • Mark1158
      Mark1158 crydtal40489

      Posted

      When my hives we extremely aggressive I tried many products to stop the itch. The best topical treatment was something I stumbled onto accidently. It is not advertised as an anti itch product but for some reason it works. It's called Baobab Body Butter. It's sold online by a company called Newskin. The next best topical treatments were the various  anisthetic creams sold in chemists only. 

      The very best results came from hot water. I would stand in the shower and direct "very" hot water directly to the area. I would slowly increase the temp to the point where it was to uncomformable to continue. The process took about 3 minutes. This would stop the itch for 1 to 3 hours. It's a somewhat impractical solution if your a busy person. I mainly did this at night. I could get a few hours sleep after each shower. Sometimes I thought it may have even stopped the hive from growing or even reduced it. ???

      Thankfully after 12 years I have controlled my hives through diet vitimins and supliments. Glycine being the most important eliment in my case. 

    • lorraine34338
      lorraine34338 ali2697

      Posted

      Like the lady above you must have specialist input a general practitioner/family doctor just doesn't have the knowledge even if they think they have!!
    • Mark1158
      Mark1158 lorraine34338

      Posted

      I have been reading comments from various people suffering from Hives for some months now. It seems to me that the major problem most people have is identifing Hives as a disease in its own right. My 12 years of research point very clearly to the fact that hives are mearly an indicator of another issue, the real issue. In the early days almost all of the medical advise I recieved from doctors related to treating the hives themselves. Steroids (prednisone) to bring down the inflamation etc etc etc. These treatments did appear to "work" but they are not sustainable in the long term and when they are stopped the hives return, because the real issue was never addressed, just the systems associated with the issue. 

      In my case, as I have mentioned previously, my issue was with my liver.  

      For various reasons my liver was / is not able to process salicates properly. My doctors put me on Glycine and a few of the B vitimines.

      The liver needs Glycine to detoxify and remove salicates through a process called Glycination. For various reasons my liver, like may many others, does not produce enough Glycine.

      You need to find a doctor who understands these things. It's all quite new and some will dismiss it, however in Australia at least some doctors are keenly interested . My GP was most helpfully and very impressed with the results.  

       

  • tessa721
    tessa721 gracIe53

    Posted

    You have described word for word what I have been through this past year and a half. Every detail from the psychological turmoil to the respiratory problems accompanied by a chest infection to the need for carrying an epipen around.

    My hive doctor refused to explore underlying causes and eventually my chest problems became so bad that I sought medical attention from a pulmonary doctor. I was prescribed Arnuity which has seemed to help my lungs tremendously. I can breathe again.

    Ever since my hives have been less bothersome and my normal daily dosage (20 mg centrizine-twice daily, 150 mg ran timing - twice daily, and monolukast once daily) has helped my cause. Though... if I quit taking my medicine the hives will return.

    I think the condition is linked to the environment. Especially now that my live-in boyfriend appears to have the same thing which has developed just recently. And I have noticed that when I leave town (medication or not) my hives are non-existent.

    I hope this has helped you - though I know words can only do so much. I know your thread has helped me.. I knew the hives were caused by something - specially my chest infection - and now you have confirmed this for me.

    thank you

  • HypocondraVick
    HypocondraVick gracIe53

    Posted

    After reading your story I felt like I wrote the story because I feel the same way except I having gone into shock yet but the itching, the sores, the no social life and the depression is all the same. I've even started to be an agrophophobiac? (Fear of going out among people). I don't want to be seen out in public because I have this stupid rash that won't go away. I've had it for a year and it just seems to get better in one area then it starts in another. It was all on my arms up to a month ago and now I'm itchy all over and I have red raised areas of skin that itch like crazy. I have tried antibiotics, creams and every anti-itch that you can buy over the counter, nothing helps! I'm going to doctor again on Tuesday. I've even prayed to God to heal me and it almost went away completely only to come back with a vengeance this last month. I've never been allergic to anything and can't imagine what's causing it but if something doesn't help soon I'm afraid I might go totally mad and be committed because it consumes my thoughts. I pray you got relief and if so what helped? I don't want to go a whole another summer like this. It's not fleas, bug beads, moskitos or anything like that because I've eliminated all easy explanations. Wish there was home remedy that would at least take away the itching because I am so tired of it. Thanks for posting, at least it's nice to know I'm not only one suffering with this!

    • lorraine34338
      lorraine34338 HypocondraVick

      Posted

      Don't even consider GP as they have no idea what urticaria is, need to see a specialist dermatologist and ask to be referred to one.  If you are in UK there is one in Sheffield called Dr Sabroe who knows all there is about urticaria.  Your immune system is is chaos which is why you are getting this.  If you have recently had an illness or if your stomach and gut are inflamed your immune system goes into overload. I've no idea how old you are or if you are female but oestrogen plays a big part as well.  My two bouts of urticaria started after I came off hormone replacement therapy.  I have found that bathing the itchy area with very, very salty water helps enourmously. Tight clothes and chafing can also aggravate your skin.  It may not be anything to do with what you eat but I would advice you to look up on the internet histamine free foods. There is a list out there that can help.  Stress and anxiety are also a factor and its a vicious circle to get out of.  Good luck.

  • debbie61829
    debbie61829 gracIe53

    Posted

    I am under great stress with my oldest son being a drug addict and his addiction became much worse 2 yrs ago that is when my uticara started and my son has gone missing and now the uticara became much much worse. So I am sure that it is stress related
    • crydtal40489
      crydtal40489 debbie61829

      Posted

      I have had it twice now in my life. The doctors keep saying stress related even at times when I don't feel stress it still happenssad my body has cleared it up once before. I am doing better now but I still get very itchy with at times hives so I believe my body is again clearing it up.

  • dave40336
    dave40336 gracIe53

    Posted

    Hi  I totally AGREE with you we are just left to suffer in silence,

    I had urticaria 30 0dd years ago, now for some reason it's back,, so what progress

    have they made, still the same basic treatment,

    • lorraine34338
      lorraine34338 dave40336

      Posted

      There's no progress because each person's trigger is different and some GPs and dermatologists do not take it seriously because it's not life threatening and it confuses them. Alot of doctors do not want to admit that they can't cure you. Tough luck us eh!

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