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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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  • becky77657
    becky77657 gracIe53

    Posted

    2 years ago I broke out in hives. The hives kept up for a year and a half before I finally found the answer. Iron and b12 deficiency. It took 5 doctors to find this. One thing no one told me while dealing with chronic gives is this, do not consume caffeine, alcohol, pain medicines (especially ibuprofen) and no anti-acids. All of that stuff makes the hives worse. I have to avoid pain medicines still. Ibuprofen decreases red blood cells, not a good thing if you need to rebuild them. Once I started high doses of b12 and iron, my hives were gone for 3 months. The most relief I have had in that time. I made the mistake of taking ibuprofen for a week and a half straight. The hives came back after a week of ibuprofen. LESSON LEARNED! Now I'm almost starting all over.

    • debbie61829
      debbie61829 becky77657

      Posted

      I had my b12 checked and it is fine, I take antacid regularly for severe heartburn and ibuprofen for a knee injury. Should I stopped them to see if it clears up, how long would it take to see if they are the triggers?

      Thank you

    • lorraine34338
      lorraine34338 debbie61829

      Posted

      Hi Debbie, on no account should you take NSAIDS, these include ibruprofen, aspirin, dyclofenic etc. They are anti-inflamatories and do trigger hives.  Keep to paracetamol based pain relief and you can always have de-caf!  You are correct about having vitamins, I did and along with other things helped me.
    • debbie61829
      debbie61829 lorraine34338

      Posted

      Paracetamols dosent help with inflammation though and I have alot of that around my knee.
    • lorraine34338
      lorraine34338 debbie61829

      Posted

      I understand this but you have to try other things, gel on your knee, ibuprofen or volterol is ok but you'd have to ask pharmacist what could help your knee other than NSAIDS.

    • dave40336
      dave40336 becky77657

      Posted

      Hi Becky

      Regarding taking  b12-methyl? Is this the full word,, as my chemist's have never heard of it, only vitamin b12,  and my local Holland and barret store list a spray you spray into your mouth called methycellulose.

    • lorraine34338
      lorraine34338 dave40336

      Posted

      Hi, Holland and Barrett don't sell it go on Amazon and look for B12 methylcobalamin which come in 1000mg or 4000mg by Nu u Nutrition.

    • emily36239
      emily36239 dave40336

      Posted

      Hi Dave,

      This is what I found today in relation to B12.. I'm not sure if this helps but it should say it on the label if it is cobalamin or methylcobalamin, the cobalamin is the normal version found in pharmacies, vitamin shops etc, then the methylcobalamin a different type.

      Vitamin B12 can be found in two forms - methylcobalamin and cobalamin. While the body can readily absorb Vitamin B12 as cobalamin, it must first transform it into a coenzyme to become the active form naturally found in the body. This coenzyme, body-ready form is known as methylcobalamin.

      I'm not too sure if this answers your question today but I found this out today so I just thought I would share.. ??

    • becky77657
      becky77657 dave40336

      Posted

      Dave i take a chewable b12- methylcolbamin. I take 4000 mcg a day as recommended by the doctor. I put them under my tongue and let them dissolve. I take 2000 mcg in morning and 2000 in evening. I'm not saying this is going to help everyone. In my case it has helped 100%. You may be able to order these online at the store I get them. B-natural vitamins in eau Claire, WI.

    • becky77657
      becky77657 debbie61829

      Posted

      I found magnesium and grape seed powder helps with inflammation and sore muscles and headaches, even cramps. You can 2 of each every 3-4 hours. They don't kick in as fast as ibuprofen and Tylenol does but it does help me alot.

    • becky77657
      becky77657 dave40336

      Posted

      Dave I also take an iron supplement. Just a norm dose. But I think it helps alot with my energy levels. It gives me an extra boost. One thing I experienced during my chronic hives was extreme fatigue. I went to the doctor 6 minths before the hives started and was concerned. I told the doctor I was always so tired. I also said I felt like something g was wrong with my heart. i just felt totally off. The doctor laughed at me and just wrote off my concerns. I think that was when my red blood cells were getting off course. My experience with the medical doctors was very bad. Noone wanted to really take the time to help me or figure out what was causing this. When I started the b12-mc there was such relief. The doctor told me to give it 2-3 weeks for improvement. I noticed improvement after just a few days. 100% hive free at one month.

      I hope this helps some of you!!! I know it may not help everyone but if it helps one that would be fabulous. And b12 is safe to take in higher doses. Stress depletes your b12 levels. I had chronic stress for several years.

      Please let me know if it helps!

    • dave40336
      dave40336 becky77657

      Posted

      Hi Becky

      Thanks for the info and advice, i had this urticaria and the lips & eye swelling, 30 plus years ago,, never found the cause,, i think it may of been stress, or the stress did not help or body changing as someone said every 7 years so hormones maybe, as a lady on here while pregnant no hives, who knows,, i have some vitamin b supplements here it includes the b12 only small tablets about 10mg, i notice they pick you up as i have days when i have little energy, also i get a pick up from dark chocolate, i also find exersise helps, as when i wake up and have the rash, i have breakfast and then walk my dog for approx 2-3 miles fast pace, and the rash swelling starts to fade, and i cope through the day until the late evening about 9,30 i start to feel strange and the rash starts to appear, i take one lardine at the moment and it does not stop the rash, but it helps,, i went to my opticians yesterday asked if i was on any medication, so i said have you heard of urticaria, he said yes i have it?,, for nearly 4 years, and we had a good discussion about our symptoms and what works he also said exersise,

    • HypocondraVick
      HypocondraVick lorraine34338

      Posted

      I agree with you, when I first started getting this over a year ago I was taking a large amount of ibruprofen and when I quit taking so many it started clearing up a little. I went to a 3rd doctor and she gave me 2 creams, 2 anti-itch and steriods and it was going away, it was pretty much all gone and now I have another itchy bumpy patch on my left arm again. I'm so so very tired of this and makes me so depressed I can't hardly evne function and wearing bandaids all the time is awful but if I don't then I think people think I'm on drugs which I'm not. I just want to cry!!

    • lorraine34338
      lorraine34338 HypocondraVick

      Posted

      I tried all sorts of things to stop itchiness and reduce the weals and lumps and found that heavily salted water, the salt totally dissolved worked to reduce itching every time when I bathed the affected area. It sounds like your doctor is treating hives like eczema or psoriasis so you need to find a specialist in chronic urticaria. Until you do this you are unlikely to get the medication to help you. Good luck.
    • woweewow
      woweewow becky77657

      Posted

      I just registered to tell you all that B-12 seems to have cured my hives as well! Only I needed a much higher dose: 

      I'd already been taking B-12 (Methyl) in what I thought was already high doses (two 5000mcg quick-dissolve tabs a day). For kicks, I decided to double my dosage-- and surprisingly the next 24hrs was a "good day". So I decided to take it to the next level... For the last four days I've been taking 30,000mcg (two 5000mcg quick-dissolve tabs 3 times a day) and right now as I type I have zero hives. I know its only been four days, but... even when I was on prednisone this last time I didn't have ZERO hives.

      I've been suffering with hives off-and-on for 15+ years, so this is a pretty huge discovery for me.  When I googled it and found your post, it gave me hope that this isn't a fluke.  definitely worth telling people about to try it and see if it helps them.  I haven't been hive-free in months and I feel amazing right now smile

      Good luck to everyone and Happy Holidays!

    • mimoza35751
      mimoza35751 woweewow

      Posted

      Hi there I am happy for you.

      I have been sufferingfor 6 years with hives .I saw my doctor last week and i asked her if she has seen any other personlike me suffering for so long.She said no .you are unusual.

      Oh god o ly people that suffer like me can understand how hard our life is from finding no solution.My nerves are very tired from not finding a cure I just take cetirizine for years and I feel not good after taking it.Only it make me sleppy and dexperate and memory loss.

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