Life With Chronic Urticaria

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Today is World Urticaria Day 2015 and in support of all of those suffering with this awful disease, including myself, I wanted to try and explain what it is like to live with Chronic Urticaria (CU). Because that’s what we do. We live with it. It affects every hour of our day. Every day of our week. Whether we’re awake or asleep, the CU is there and although you can’t always see it, you will almost definitely be able to feel it. And in those very rare times you can’t see or feel it, you are waiting on its return, anxious and aware that at any moment it could take over your entire body. Even during the rare times your body is not affected, your mind certainly is.

Chronic Urticaria is a disease that takes over your body and your mind. It takes over your life and can change the person you are/were entirely.

I have suffered with CU for ten very long months now. In that 10 months I have been on one hell of an emotional rollercoaster. I have experienced discomfort beyond words, cried myself to sleep night after night and been filled with fear at what is happening to my body. I have seen 8 different doctors in 3 different hospitals. All of whom can’t give me the answers I need. I have taken up to 16 tablets a day, none of which have gained control of my symptoms. I have struggled to maintain my career, to keep my relationship with my husband what it should be and struggled to be the mother and friend I want to be. For the first few months I suffered with the disease I wouldn’t leave my house and couldn’t sleep at night without physically holding on to my husband for fear something may happen to me in my sleep. Chronic Urticaria is a hideous disease to live with and it has affected all areas of my life – my relationships, friendships, social life, work-life… It can affect anyone at any time and it changes lives dramatically. Yet there is so little understanding of the condition and the effect it can have on the patient’s life. Here is a little insight….

Urticaria is the scientific name for hives. Hives appear on the skin suddenly as red, swollen and itchy welts. Urticara itself is very common. The most common type lasts 24 hours and for most people it will settle within a day or two. In some cases it may take a few weeks. When Urticaria lasts more than 6 weeks it is diagnosed as Chronic Urticaria.

I have suffered with Chronic Urticaria for 10 months now. Others I have spoken to have suffered for 10 years, others their whole lives.

Every patient suffering with Chronic Urticaria suffers differently. I can only speak for myself. My Urticaria is visible daily. On a good day I have a few hundred welts (small, raised areas.) On a bad day I have thousands. They cover my scalp and every inch of my body down to the soles of my feet.

They look like mild blisters and are red in colour. The welts last between 2-10 hours. Each day my skin will flare, then return to normal, only to flare again the following day. In 10 months I have had no day without welts appearing and affecting my body and my life.

For those suffering with Chronic Urticaria a related condition called Angioedema may occur. I am one of the unfortunate ones that suffer from this alongside the welts. In this condition fluid leaks in to deeper tissues under the skin causing the tissues to swell. This swelling can occur anywhere but for me it occurs on my eyelids, lips, throat and face.

A quick google search will tell you that Chronic Urticaria is

“..a condition where an itchy rash persists on and off for six weeks or more. The cause of the rash is often not clear. Some people also develop swelling of the lips, tongue or other areas of the body from time to time. The symptoms can often be eased with antihistamine tablets.”

But ‘itchy’ doesn’t really do this condition justice. I can tell you that, at times I wish I could literally rip my skin off. The itching is so incredibly intense that I will scratch myself until I bleed. And I only stop then because there is no skin left to scratch. The itching can cover your entire body. I cannot tell you what it feels like to itch from your scalp to the soles of your feet. No amount of scratching or rubbing will ease it. You cannot concentrate on anything because the itch is over-whelming. It is very hard to enjoy life when your whole body is silently itching away and there is nothing you can do about it. Because unlike the bold statement above suggests, in many cases antihistamines have to be taken in extraordinary high levels to receive even part-relief. For many sufferers no relief can be found.

I am part of a CU support group on FB and the cocktails of anti-histamines the members of that group take would leave you open-mouthed. We are not talking a dose of piriton here. Sufferers are having to take up to 10 antihistamines a day, alongside other drugs such as beta blockers and steroids. And this is just for partial relief, not complete.

Chronic urticaria is a very mysterious disease. Few people know of it and even fewer really understand it Some sufferers are allergic to foods or substances but others are suffering due to an autoimmune problem.

This means that our own immune system causes damage to our own body. I am not allergic to any food types and I am not allergic to washing powder. (Although I am asked this on a daily basis). I am actually allergic to myself. I am allergic to my own body.

Urticaria affects us all in different ways. My urticaria appears daily no matter what I do or what I eat. I cannot make the Urticaria any better but I can make it much worse. My type of Urticaria is triggered by any stimulation of my skin. I cannot allow any part of my body to be cold. I often wear 3 or 4 layers and under these layers I have to wear themo-regulating tights. This can make dressing very difficult, and dressing for an occasion almost impossible.

I hate the daily dread of having to find clothes that might actually help me get through the day. It is no longer a case of what I can wear to look nice or feel good. It is simply a case of finding clothes that can cover all of my skin and help me gain some kind of control of my symptoms throughout the day. If it is windy/cold outside I must cover every inch of my skin. However, my Urticaria is also triggered if I become too hot! Go figure!

Skin stimulation can also occur from touch. Sometimes I am literally unable to be touched by those close to me. That is extremely difficult to accept. At a time when you are hurting and scared and need a cuddle, you are unable to receive touch and comfort from those you love.

Treatment for Chronic Urticaria differs dramatically from patient to patient. The first stage of treatment is to take antihistamine pills. The second stage is to take ‘off-label’ levels of these pills and try various cocktails of them.  I have tried at least 8 types totalling up to 16  tablets per day. These tablets can cause drowsiness and weight gain alongside other side effects. The third stage, the one I’m currently on, is to take Asthma drugs alongside antihistamines. The side effects may include behaviour and mood changes. For me, they gain no control of my symptoms. Even on such high levels of medication I suffer daily. The next stage is the use of a costly injectable asthma drug (Xolair) or drugs that reduce the immune system responses. Sufferers have varying levels of success with all of these medications. Ironically, I have an appointment with the consultant today, World Urticaria Day, to discuss my next steps.

In the majority of cases the exact cause of Chronic Urticaria cannot be determined. In these cases the disease is called Idiopathic.

Chronic Urticaria greatly impairs quality of life. It has completely changed me as a person. I have lost all self-confidence. I suffer from increased anxiety as a result of never knowing when the disease will strike each day and when it will finally leave my body or at least be controlled. I am extremely self-conscious. I have become uncomfortable in most social situations and have become awkward around others. I feel extremely unattractive. Urticaria affects your appearance massively. It may only be for a few hours each day but those hours are very hard to get through. I’m also terrified that one day the swelling to my face and throat might go beyond painful and become life threatening.

I am extremely lucky that I have a very understanding husband. Chronic Urticaria can put a huge strain on a relationship. Luckily for me that is not the case.

On world Urticaria day 2015 my hope is that we can gain a wider understanding of this mysterious condition that is having such a huge impact on so many lives.

For all those suffering with Chronic Urticaria, I feel your pain, your fear and your discomfort and my heart goes out to you each day. I hope that you find some relief.

For all those living with someone with Chronic Urticaria, I thank you for your patience, care and understanding. We could not go through this alone.

For all those in the Chronic Urticaria group on Facebook I thank you wholeheartedly for your support and kind words. This disease has turned my life upside down. The past 10 months have been filled with fear and with tears but you have helped me enormously. You give me support and you give me strength to get through another day. Prof Greaves, Dr Grattan and Dr Jones, I thank wholeheartedly for their outstanding level of professional care, compassion and understanding of this condition.

Thank you x

If you would like to contact me to discuss Urticaria and its symptoms, please feel free to contact me here. I would love to talk to you.

Since writing this article, Jen has been approached by national newspapers to continue to raise awareness about this disease. You can read her article in the Daily Mail Online here.

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  1. Tommy

    It was less than 10 months ago we met and on top of all that going on, you braved 10 children!
    I can’t, even for a moment, imagine how hard that must be for you. To think that I moan when my ankles itch! It’s great that you have a good man like Al by your side. I hope they get to the bottom of it and find a way to make it more comfortable for you. Even better if it disappears, never to return.
    Personally, I don’t think I’ve heard of it before. I know there’s things like this out there but never knew anything about it. Try and keep your chin up, you’ll beat this

    • Al Ferguson

      Ah thank you for your kind words Tommy. You are a good man. Thank you :) Jen x

      • Kortney Hogan

        Hello Jen,
        I made this account just so I could reply to this post.
        I’m Eastern medicine, rashes are generally thought to be the result of an “accumulation of heat” in the body. They use various herbs to combat this excess heat, by cleansing the blood.
        I recently ordered one of these from a bulk retailer. It’s called Xuan-Shen. I’m not necessarily sure of best dosages since everything is in Chinese, but I’ve been grinding up small amounts and adding it to smoothies.

        For some reason, I felt like you needed to know about this so you could try it if you like.

        Hope this helps.
        Much love,

    • Stefany Gomez

      I seen a post about your condition on Facebook! And look more into it because I went through the same . I was having CH ON AND OFF FOR THE LAST 5 years. A few months ago I had them really bad and went to a lot of doctors and specialist and nobody could help me . Until I visit a really good dermatologist who try xolair on me . That is a miracle drug ! I had them for about 5 months every day. I had my first 2 xolair shots and 3 days later I was clear and haven’t had a break out since! I feel your pain. Try xolair! Hopefully it works for you. Stay strong hopefully it works for you .

      • Al Ferguson

        Hi Stefany. Thank you for getting in touch. I have just been recommended for holier. I’m not sure where you live but in London it is very hard to receive the drug due to it’s cost. Hopefully I will be accepted and the drug will help :) I’m so glad you found relief. :)

      • Ian Kittelson

        Is there any way you could help me? I’m a 14 year old boy and I break out whenever I’m stressed or hot. They go all over my face and body. There are more than about 10,000 and there terrible

    • Samiah Fathima

      Hi, i am suffering from CU since 15 years. It was first caused due to overdose of antibiotics. From theb each and eveey day, out in the sun, free walk, warm environment, jumping, skipping, running… It destroyed my whole life… It really us an awful and disturbing condition.. Consultee many doctors and had many medicines that additionally triggered pcod as part of hormonal imbalance..
      I dont want medicines any more ?. Please if you could help me to get through.. Im still a student.. Suffeeing from my 8th age… Hard to face the daily day

  2. Harps

    I had no idea about this condition so thank you for raising awareness. My heart goes out to you – I pray and hope you get some answers today! I struggle with eczema on my hands also triggered by temperature and that has often resorted me to tears and so I can only imagine how painful it must be to feel itchy over your whole body. You’re absolutely stunning and an incredible woman for trying to channel your own pain and insecurities in to helping others. I can tell how much Al dotes on you – it’s always so helpful (and sometimes overwhelming) having such an understanding and caring partner. xx

    • Al Ferguson

      Thank you so much for your kind words. Teary eye moment!Today is Urticaria Day so I’m really hoping to raise awareness. One thing I know without doubt is that I could not get through this without Al. I feel incredibly lucky. Thank you again. Jen x

      • Nigel

        Hi,I’ve been suffering with chronic urticaria and angioedema on and off for 12 months,you have my total empathy and sympathy,these critters really itch and burn,I’m in slight remission at the moment but dreading there return,sending you heart felt healing x

    • Sumaiya Ilyas

      Hey, I am suffering with this since last 8 months.I have a 9 month old baby and it is so difficult to take care of him when it becomes severe.I can completely understand your pain and condition.I am on a dose of anti histamine tablets right now but if I miss even one medicine it strikes back and the condition becomes very severe.I hope God protects everyone from this disease and that he provides comfort and relief to all suffering from this.If any one of you gets to know some medicine that can cure this disease please, let me know.I would be really grateful.

    • Mr Junior Samra

      Hello Jen
      May I say your experience and your explanation are very thorough, relatable, insightful, enlightening and also a little humorous.
      Especially the part where you say that you are allergic to yourself.
      That’s exactly how I explain it!!
      I’m there with you daily over the last 2 Months, this is my 3rd bout!
      I have found screaming and praying and being mad at the Universe doesn’t help!! Alas! My Specialist Dr @ St Mary’s Paddington said “it would go just as fast as it came!!”
      He was right, so trust me when I say you have that to look forward to!
      You will live by your experiences and learn to live with caution and not paranoia..
      Good luck x

  3. esther

    My son (then 10 years old) suffered from chronic urticaria for over two years…just like you described. It was truly horrible. We tried everything…
    I just want to share what worked for him- he takes 2 otarex and 2 famotidine pills every day for the past few years, and except for some very light itching once in a while, he is symptom free!
    However, i truly believe that what helped the most is the fact that he went to therapy to deal with the stresses he was living with at home (a father suffering from srvere depression)…we now realize that the urticaria was very linked to stress, and even now the times he gets itchy are when he is nervous or stressed out.
    I wish you, and all sufferers like you out there to find relief and regain control of your life as soon as possible!

    • Al Ferguson

      I am so sorry to hear he suffered but so pleased to hear he has found relief. I have never heard of those meds. Where do you like? UK? Thank you so much for your kind words and I hope your son continues to recover. I’d be very happy to chat with him if he ever wanted to talk about it :) Jen x

  4. Rosina

    Beautifully written and being medically trained I feel also written with patience and grace…. Urticaria flares I know from having had them myself over the years are frightening and all the symptoms that come with it! Having it chronically I can only begin to imagine what you go through each day! Hopefully from publishing this article you will reach further medical specialist who will come forward to help you :-) The unconditional love of your soul mate Al is obviously the strengthening bolder you have to get up and face each day with grace and beauty… oh and Gorgeous Teddy of course! Hat off to you… what your living with daily would be enough to send most people around the bend…. Best wishes to you and for eyes of other readers…. imagine this peace of writing not so accepting and eloquently written and you may, just maybe, be nearer understanding the effects it has on people! xx

    • Al Ferguson

      Ah thank you so much Rosina for your kind words. I feel incredibly lucky to have Al support me through this. Thank you and happy birthday for the up coming event ;) Jen x

      • Rosina

        Bless you! Thank you for the birthday wishes :-) xx

  5. alan herbert

    OMG how do you live with that.

    I’ve a few Mozzie bites gained on the holiday and have been scratching like a flea bitten dog. To live like that for he last 10 months is unimaginable.

    I hope you find something to help ease the symptoms and hopefully eradicate the disease altogether.

    Thanks for sharing Jen. An insight into something I was unaware of till now.

    • Tracey Brogan

      It feels more like a day old burn, stung by a bee and rubbed with poison ivy with some nerve pain to go with it. It’s absolutely maddening.

  6. Honest mum

    This makes me so sad, my son suffers, not chronically but it’s an issue for us and so many things can trigger it, wheat, hayfever, even being on the tube. I have noticed it affects me too. I hope we all get answers soon and you are well again x

    • Al Ferguson

      Thank you for your lovely comment. I hope that he can find relief from his symptoms soon. Jen x

    • Monica Mccollum

      Hi how are you now? I have suffered this every day for 4 months no end in sight would love to hear how you are and if you had the injections to help? Sending love Monica

  7. jen

    For those suffering, please ask your doctor about Xolair injections. It has changed my life with CU. Good luck!

    • Al Ferguson

      Hi Jen. So glad to hear that worked for you. Where do you live? UK? I just saw the consultant and he said it is very difficult to get it approved in the UK.

  8. heather

    I have had this same condition for awhile now. At its worst I had hives everyday for a full year with no relief. I was never given medication to help with the pain. Now I have hives almost daily but it is not as bad as before. I am truly sorry for anyone who also struggles with this.

    • Al Ferguson

      I am so sorry to hear that you suffer too. What medication are you on Heather?

  9. Susan

    Beautifully written! I’ve shared your piece on facebook to help everyone understand CIU (I’ve also included an excerpt from my own battle). 2+ years strong!

    Here’s to us finding relief. Happy Urticaria Day!

    • Al Ferguson

      Thank you for sharing it. I’d love to read your excerpt :) Happy Urticaria Day :)

  10. Sue Hargrave

    Wow! Thank you for so eloquently explaining my life on a daily basis ! It will be 12 years in December, and you nailed my daily life ! Can I put on a bra today, will the delayed pressure urticaria allow me to walk,? Will I have the face of a gargoyle by 3 pm? What if._______? ( Fill in the blank!) There is only one medication that is considered an “online” drug for Chronic Urticatia- Xolair, and as you said, all the over the counter drugs. Getting ahold of anything else can be a battle, and hours are spent begging for another drug to try- paperwork, phone calls advocating for your self, and once again being rejected. There is no cure for this disease. I so appreciate your story, as it resonates so personally to me. It is its own type of torture, and since I live with it daily, as you do, the torture is never k owing when it is going to take you down on any given day, hour, minute. Quality of life is an issue: oh, so huge! We need to join together and continue to advocate for ourselves, as you and so many others are doing! My Facebook page is filled today of the same types of topics- when we all join together, we can make amazing strides in others understanding how we live, and possibly down the road, find a drug that can ease the pain and suffering we deal with. Hugs to you for your bravery and tenacity! Well done!

    • Al Ferguson

      Thank you so much for your comment Sue. I am so sorry to hear how your life is so affected by CU. I’m even sorrier to hear that you haven’t found the cocktail that offers you some relief. I cannot imagine how you have lived with this for so long. My heart goes out to you. Thank you so much for all you do for the support group. It has given me so much strength and it means so much to so many people. Thank you x

  11. Mrs H

    Wow, what a powerful piece. My heart goes out to you. I get Urticaria when I react to certain medications and I scratch my skin until it is a bloody mess to get relief. I can’t even begin to imagine what it is like to have that 24/7 for over 10 months. Thank you for raising awareness and I really hope the consultants are able to help you and give you some relief. I am also so glad that you have such a supportive husband in Al. Big hugs Mrs H xxxx

    • Al Ferguson

      AH thank you for the hugs :) Sorry to hear you get this too- a lot of medication can cause this reaction. Most people with CU can only take Paracetamol. I am SOOO lucky to have Al and honestly could not imagine a single day without him. Thanks again x

  12. Caroline

    Amazing piece of writing. So perfectly, sadly true. Although with CU we can have differing symtoms to deal with, you have managed to give a really deep & broad insight to the effects it has and the toll it takes on every aspect of our lives. Hoping for a cure .. from one of your fellow Facebook group members x

    • Al Ferguson

      Thank you so much Caroline. It means a lot to me that you think that I have explained it well to others. I am sorry you are suffering too :( x

  13. Sheila

    Great piece. Having suffered for over 10 years, I am lucky that the Xolair has put me in remission. I hope you are able to find the “magic” combination that will help you as well! Hang in there and know that your fellow FB group supports you!

    • Al Ferguson

      So pleased to hear that Sheila. I have just been put forward for Xolair. I am so sorry that you suffered for so long :(

  14. Jsmiley

    I sat here & cried as I read this. I’m so sorry that you suffer like you do. I have a friend who battles with chronic urticaria as well so your story hit home. I’ve watched her break down time & time again…often altering our plans and making her depressed over something she just can’t control. I’m trying to understand it more & your post has been helpful Of course since my friend deals with it I’d like to help her. I’m sure you feel like you’ve tried everything under the sun to help.
    Could I share what I think might be a possible help? Have you changed your diet? I could go into depth on why I think your diet is the cause – and it’s very possible that you’ve already tried changing your diet – but I don’t want to overstep my bounds.
    I found this guy’s testimony which might be worth your time to watch: I dunno…I just want to be helpful so I hope this doesn’t come off as annoying.
    Another help might be learning more about essential oils…They work on a cellular level which drugs cannot. Again, just trying to be helpful.

    • Al Ferguson

      I am so sorry to hear that your friend suffers with this too. Is she in the support group? It’s great. Thank you for your suggestions. That is very kind of you. i really appreciate it. Thank you :)

  15. Aisling

    Love this artical I’m suffering from chronic urticaria the last 8/9 months it’s awful there are some days where I cannot walk due to the welts and swelling on the bottom of my feet! I actually cried reading this. How can I find this support group?

  16. catrina

    Thanks for Sharing your Story & Being Our Voice. I’ve been suffering From Chronic Idiopathic UTICARIA & ANGIOEDEMA Which is a NIGHTMARE. The Itching will Drive You Insane if your Strong . I PRAY To GOD to Please send a Cure and To At Least Send the DR’S the Knowledge to Find the cause of This Hell.

    • Al Ferguson

      Thank you for your lovely comment. I could not agree more. I hope you find relief soon.

  17. Monika

    Hi Jen&Al,

    First thing first, before I forget. I suffer from eczema, asthma and allergies since 3 months old. I am 39 now, happily married and with skin under control.
    I suffered from a couple of scary allergic reactions, brought on mainly by something I accidentally ate or something out of my control (wasp’s venom secreted in the salad).What I am trying to tell here is the fact, that only about on 3 occasions I ended up with an adrenalin injection through my gp.A part of my allergic reaction was a very similar description of urticaria like symptoms on the skin where lymph nodes are found, I scratched so hard and could not feel it at the time, only later, I felt utterly exhausted and sore, as if my body was half frozen.
    I am in no position of giving advice, but:
    keep an eye on not sliding into depression (suffered from it a few times, as a kid and adult – mainly because could not sleep well at night, proned to overheating. (cotton sheets helped a lot)-anxious about ordinary every day things-life gets a bit more complicated thinking of creams….medication…I am pretty confident when I say, I triggered my own anxiety (90%my imagination).Britain has not got a huge no. of allergy specialists, try to find one – around London area (I would even consider a private consultation – your account of events pretty serious).Some good skin specialists – also on NHS. (try them first).
    Now I’m gonna sound weird, but find out more about desensitising treatment if any use to you. NHS doesn’t finance it, as it doesnt have strong success results for NICE to approve it.A lot with skin and allergy troubles is a hit and miss-no precise way to tackle it, but a lot of trial and error ahead.KEEP YOUR CHIN UP, you get there.GOOD LUCK. With supporting family around, you are half way there.

    • Al Ferguson

      Hi Monika. Thank you so much. I have the most amazing consultants in St Thomas hospital thank goodness. It makes such a difference. I am just being put forward for holier so fingers crossed that will work for me. I am so sorry to hear about all of your symptoms but am so so pleased to hear it is now all under control. Thank you for getting in touch :)

  18. Reagan

    Hello with peace and calmness for you and your body. Pls take the time to find and gather Louise L. Hay’s book You can heal your life and You can heal your body. Let your intuition guide you and your journey to healing your beautiful skin begin there.
    Love Reagan

  19. J Smith

    I have suffered from CU on and off since I was 14. I’m now 29. It is no where near as bad as the OP’s but I get huge angry welts all over my body, my face, lips, tongue, eyelids will swell up, to the point where it looks like I have gone ten rounds in a boxing ring. There are times when my lips get so big I feel they might explode. If I get a welt on a joint or sometimes anywhere else, if it is big enough, it goes beyond itchy and I am just in pain. I’ve been to the Dr so many times but they can’t seem to do anything for me. I go through episodes. There can be months or even years when I don’t have a flare up and then out of nowhere, I’ll get a bout that lasts any thing from days to months. Sleeping can be difficult to impossible. My mum who is a nurse says I just need to keep going to the Dr. She is worried as it has made my tongue swell in the past which can be dangerous. I’ve done a lot of reading and it seems so many people are struggling with this apparently inexplicable condition. I wonder why more isn’t being done about it.

    • Sue

      JSmith, I am so very sorry this is happening to you. A small amount of hives or a big amount of hives – they are all equally miserable. Has your doctor suggested Xolair? There are quite a few drugs on the market that might make a difference in a Mast Cell Disorder. Talk to your doctor about Xolair (omalizumab), Cyclosporine, and an array of antihistamines. I’ve had this for 12 years, and have it daily. It is not at all fun, whether it’s 10 days a year or constant. Quality of life is still impacted, and every day is worthy of being GREAT.

  20. Mattie

    I have been suffering with CU for about 4 years, I have had bone marrow biopsys and surgeries in an attempt to diagnose it. I was on prednisone for two years, which caused relief of my symptoms, but also caused weight gain, acne, and necrosis in my hip (meaning that peices of my bone in my hip joint were chipping.) I was placed on a high dose of cyclosporine for two years, which put me into pre-kidney failure. However, until the complications cyclosporine was absolutely amazing at controlling the hives. I was then placed on xolair, which did not work. Now I take dapsone and plaquinil. These are anti-inflammatory medications that do not control all of the symptoms but help with the fatigue and other things that come along with the hives. My skin still burns, but no hives are actually surfacing. Please let me know if you find anything that works for you.

  21. Ali

    Didn’t want to read and run so just popping a comment to send my thoughts and hopes that you find a cure. Can’t even imagine how hard & I’ll certainly stop moaning about my eczema now! Xxxx

  22. Debs

    I suffered with chronic urticaria about 10 years ago it started in my late 20’s in particular dermatographic urticaria and for years took so many antihistamines it was ridiculous. I saw multiple private doctors, nhs doctors, did studies had so much allergy testing it was ridiculous. Tried herbal remedies, actupunture and hypnotherapy – this mainly to help with my stress and anxiety because of my urticaria.

    Then I got pregnant, stopped my antihistamine tablets and moved out of London. It disappeared. Stopped! I still can get the odd attack but it’s so mild compared to the years I suffered and struggled.

    Reading your story breaks my heart and reminds me of all the years I suffered wondering would it ever go away. Amazingly it did and since leaving London my asthma has improved massively too. Is there a connection? I’m no expert but I do put it down to the huge amount of pollution and dust I was in contact with whilst working and travelling in London. I also had a brief 3 week rest bite in that time when I travelled to Thailand. So for me I put it down to my environment in London and my stress levels.

    Sending all my thoughts and prayers that one day your urticaria will ease. Maybe even disappear like mine. Thanks for sharing your story x

  23. Lana

    I found help from a Chinese doctor. If you have a chance to visit one, go. Chinese medicine believes that everything must be cured from the inside and you should avoid “boiling” your blood. Chinese doctors in UK and US sell small granule tea bags called “Skin hygiene tea”. This drink is awesome, you drink it three times a day and it cleans your body and gets rid of excess “heat”. I was told to eat body cooling foods like:
    – Bananas
    – Pears
    – Water melons
    – Cucumber
    – Radish
    – Warm soups preferably with meat.
    – Green tea
    – Meat and chicken
    – Rice, potatoes
    Eat normally, but eat these products more in your diet.

    I was told NOT to eat food that heats up the body, which are:
    – Fish and shellfish
    – Spicy food or barbecue food
    – Yougurts and ice cream
    – Soft cheeses like feta, mozzarella etc. Normal cheese is fine.
    – Pineapple, grape fruit, oranges, kiwi, and strong berries. Avoid too much Vitamin C products.
    – Alcohol
    – Soya and almond milk

    DRINK A LOT OF WATER AND WARM GREEN TEA. The idea is to eat and drink things that neutralizes your body and calms down the blood. When the blood is “boiling”, you get itching and redness.

    She also told me to make this smoothie three times a day:
    1 liter of water
    1 boiled egg
    1 sallad
    1 banana

    I know, doesn’t sound so lovely, but because of banana, it tastes good. With this she wanted the bowel to work more frequently so that all the toxins would come out every day. Every time my bowel functions properly, my skin gets better.

    I found comfort in reducing too much sugar in my diet and also try to avoid too much wheat and drink my milk lactose-free. My doctor told me “Eat meat, make a lot of meat soup!” And this is true, warm meat soup calms my itching hives become less visible.

    My doctor told me to follow this for three months and see what happens. This really works. However, due to my own fault, when my skin gets better I make the mistake of eating stuff I shouldn’t and hives appear again.

    Chinese medicine is the oldest medicine. You really are what you eat. I want to cure this thing, not just hide the symptoms.

    All the best to all of us! :)

    • Margaret in KC

      I agree with Asian medicine being more natural than our own. This does sound a lot like the low or anti histamine diets I have found. And of course they all generate from other countries than our own. I have started for only a week now but I do feel better and plus side is I have lost 8lbs which can’t hurt me either. I have hopes this does the trick. I am so tired of popping pills which don’t seem to do a thing.

  24. Crikette

    I suffered from chronic urticaria for about 18 months and it was the worst months of my life. I too went to many doctors and was told many different things with none of them helping. I eventually started to take 100mg of Pepcid and 100mg of Benadryl every night and that helped reduce my symptoms drastically. If I did not take the histamine blockers I would have hives all over my body ranging in size of a quarter to some as big as a dollar bill. Once I figured out I had chronic urticaria I was told that I had a 80% chance of having them for a year and a 20% of having them for 5 years. Luckily for me I only had them for 18 months have been hive free now for 6 months without taking any medicine.

  25. Tracey Brogan

    I finally found relief with Xolair injections.

    I started about 8 yrs ago. I got a cellulitus (skin) infection and was getting blood poisoning (sepsis). Started on Cipro and a few days later started with it. The reaction happens exactly in the layer of skin the infection was. I always think maybe my immune system confused something in my own body with the infection and it still thinks it is fighting it off.

    Anyways, saw primaries, nurses, ob/gyn, endo, allergists, immunologist, etc. Tried every combo on antihistamine, H2 Blockers (which are also heart burn meds), 2 different types of what Singulair is, allergy shots, Doxepin (antidepressant used for this) homopathetic, diets, etc. Predisone works well for me, but you can’t take it long term. Finally started Xolair over a year ago. Been off and on it a few times due to insurance/renewal process. It’s not 100%, but I have my life back mostly. I still have to avoid major triggers and it starts back right before I’m due for another shot, but it makes life tolerable again. I was afraid to try it, I’m glad I did.

  26. Sam Salefske

    I can only imagine what you’re feeling. I too suffer from an auto-immune disease, psoriasis. Your comment about itching and scratching yourself until you bleed really stuck a chord with me. I’ve wanted to peel my skin off for the past 23 years. I’ve found hope through an immuno-suppressant, Humira. I’m not sure it works for your condition, but it’s provided me with relief. I hope that you’re able to find relief and go back to your normal routine.

  27. faye

    I really feel your pain. I’m 15 and I’ve had cu for about 5 months now and its horrid. i get massive island like hives everywhere, not lots of small bumps like yours which is curious, and its horrible. i don’t even know what triggers it. just yesterday i took a nap and woke up and the whole of the left side of my face was swollen like i’d been stung by a bee. my eye was swollen shut and it was just so ugly i sat down and had a good cry. I’ve taken steroids and different antihistamines but only the steroids have had any real affect but the side-effects are too dangerous for prolonged taking so i’m back to square one. i really feel your pain and i hope you get better, honestly. so many people blow it off as petty but when you suffer with soreness and itchiness and swelling all day everyday it just so frustrating because you can’t stop it, and its so depressing when you just don’t feel attractive. i’m so glad you have an understanding husband, and i hope you find relief soon enough. sorry this is so long after the article was posted, hopefully you’ve made some progress.

  28. Rebecca Sturtevant

    I suffered pretty bad for about 2 years, trying to eliminate things that I thought might be causing the problem. Laundry soaps, body washes, new foods, and so on. I discovered that I was allergic to sulfur. Which some doctors say is impossible. But after finding the high sources and cutting out or back on all of those. I have a lot more relief. In the beginning my hives were daily severe to pretty bad. Now they are mild to nonexistent.

  29. Kathleen Williford

    Don’t know if this would be of help but it may be worth a try to check out Ancestral Supplements. The Kidney support contains DAO which is an enzyme that breaks down histamine. That plus the Liver would be a good combination for this type of problem. Read the reviews on Amazon. I got almost immediate relief from chronic itchy skin.

  30. Margaret in KC

    Glad I found this! I am going on a year and it is good to see my journey at least has gone along with what others are dealing with. Because believe me I begin to think I am the only one out there! I have started the Xolair and have had 3 injections but after the third covered with massive hives and had to take yet another round of steroids! Along with the handful of antihistamines which I keep thinking would it be even worse (how could it be) if I weren’t taking them. I have just ventured down the path of low histamine diet. On a week but I have read it takes at least 4 to see if any of this works. If nothing else it is the way I need to eat. No additives basically more freshly prepared foods so you know what’s going in you. It’s definitely a depressing disorder. I unlike others do not have to deal with trying to work out side my home. One small blessing.

  31. Rosie D

    Hi there, I’ve been dealing with CU for two years now, and this is what I’ve learned. CU can be associated to HISTAMINE INTOLERANCE, which is the result of hormonal imbalances (estrogen, cortisol, DAO, insulin, ect) and a weak digestive system. That was a key phrase used where I came to discover it all, and the more severe version Involving Angioedema is mast cell activation syndrome. Food sensitivities, gluten, extreme temperatures, exercise intolerance, seasonal allergies, your period, and stress are Some things that trigger it. There’s lots of info online about mast cell activation syndrome and histamine intolerance. You can lessen the symptoms temporarily with a low Inflammation diet and/or low histamine diet, but until you help balance your stress and other hormones, and heal your digestive system (IE leaky gut, SIBO, low stomach bile, good and bad intestinal bacteria, etc) it’ll be hard to see it subside. I have taken a natural approach (refuse antibiotics, immunity suppressants, or NSAIDs) as much as possible with a strict diet and Some supplements like quercetin, ashwaghanda, turmeric, and a proprietary blends to heal my gut lining and leaky gut.I still have to take antihistamines every 1-2 days, but my other tasks keep the hives under control and let me function normally. I’m still healing my gut and am hoping to see is GI specialist, as I suspect there may be a gut infection I can’t heal with just supplements. I feel everyone’s pain though, and I Am just trying to keep faith in my body that it’s trying it’s best to keep me safe the best way it can. It my job now to listen to what it’s saying! Good luck everyone!

  32. Mayuree khound

    I work with Kinapse, a life sciences organization ( I work with pharma companies and write results summary of clinical trials in plain language for the study volunteers and public. I am involved with the results summary want to get in touch with patients in the United States with urticaria or their caregivers to get some feedback. I am looking for input to know whether the summaries are simple and relevant for patients who are fighting with urticaria. We will also give a small token of appreciation for their time and feedback. Can anyone help me with this or give me some lead on this?

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