I was diagnosed with chronic urticaria in June of last year. It started with stinging nettle like lumps behind my ears, docs originally thought it was scarlet fever but then after further out brakes came to the conclusion that it was CU. I’ve been prescribed various antihistamines but if I’m being honest I feel like they make no difference or at times make it worse. I’m 28 years old and until this I had never suffered from any skin issues apart from a bit of mild eczema so just seems out of the blue.
My 22 year old brother died in June of 2013 and I took this very hard so people are telling me it is stress related but it didn’t start for almost a year later and is been back at work several months and feeling more like me again so don’t understand why if it was stress it didn’t start earlier. I’ve read a lot of your posts and see that for some healthy eating is good and for others veg and fruit is a trigger, others meds work others don’t 😕 so I’ve come to the conclusion that it’s going to be here indefinitely. So my question is what do people find to be the main triggers and what do you use to stop the itching and raised lumps? as I have been told not to use ibuprofen. Also has anyone had any issues with employers as I have had a few occasions off work with this and am a little worried.
Here is a pic of what I’ve had this week, and it covers me from head to toe.
Patricia Coimbra My CU starts almost a year after i lost 3 members of my family in 11 months, including my mother. I believe that a big emotional shock put our body working like crazy and producing histamine. Ibruprofen causes me labial angioedema . Since January i feel better with prednisone and xyzal but the side effects of prednisone are terrible…
Nina Staples Lloyd First, God bless you. Been there and understand how miserable this condition really is. My best meds “cocktail” is Zyrtec, Hydroxyzine, and Benadryl. I also recommend a digestive enzyme and going to a very basic (paleo style) diet. Prayers lifted.
Anne Camille Jongleux So sorry. Hope you find relief. It can be overwhelming as to finding what works/doesn’t work as we’re all different. I try to focus on what brings relief vs cause as I don’t think I’ll find that source.
Kasia Barganska Thank you all for your comments, did not expect so many people to be willing to help. Jill no I haven’t had a biopsy was referred to my dermatologist and after waiting for 3 month for the appointment I was faced with a very unsympathetic doctor who just said that my doctor is right and it’s CU and to take fexofenadine every 12 hours to control it, he did some basic blood tests but no allergy testing or anything else. I work in an office and find it hard when I have a flare up as my hands swell so typing is hard and I’m sure that the pressure on my skin of sitting down causes it to swell more. Olivia I would be shocked if it was sun as I’ve always been a sun baby, and it’s not just this area it is all over. Claire I have a dog but have had the same breed of dog around me since birth but worth a look, I’m on the coil so don’t have periods but maybe that’s the problem, I’d never thought about that. Xolair injections are these in the uk? And if so is it one of those things you have to beg your GP for or are they willing to prescribe? Kevin I was told it was linked to a virus and at first seemed logical as at the start I had tonsillitis but I’ve had versions break outs since where I have not been feeling unwell at all. Thanks again everyone
Aimee Beth Praying for you, dearie. Hope you are able find some relief!
Julie McClintock McFerran First off I am so sorry. They look similar to mine. I have had them for a little over a year. I got them 6 months after the death of my grandpa, getting married, moving, and graduating school. Not all bad but definitely stressful times all at once. My gut feeling is that it has something to do with that. 7 different doctors later, I’ve been on and off Prednisone for a year. I don’t respond to anti-histamines. Xolair injections scare me because of the risks (blocking IgE, etc). I am currently seeing an Acupuncturist and have changed my diet to the Autoimmune Protocol (AIP). I am realizing that Western medicine’s solution is to cover them up with pills…whereas Eastern is all about finding the root of the problem. Anyways with the acupuncture and the change in diet in the last 4 months, it has minimized them by 50%. If I have a flare as soon as I can I take an Epsom salt bath (brings down the inflammation) and drink turmeric tea (again inflammation). PM me if you have any questions, need emotional support, etc. And welcome to the group 🙂
Caron Brookes Sending hugs and hoping you find relief soon
Julia Fontera U most likely have CIU chronic idiopathic urticaria no known cause and its most.likely autoimmune you should be asking your dr about xolair. The way they diganois is over 6 weeks and antihistamines dont help.
Rachel Rae DiSalvo I saw this photo and flash backed to one night when I was similarly covered in welts and I hadn’t slept in 2 days because of them. I used to be like a zombie and after short naps I would almost sleep walk to the living room where I would shake and scratch until I was bleeding. I would bite the palms of my hands because they itched so much. I’m so sorry you have to go through it. The good news is there is hope and if you just stay strong and find what works for you it will get better.
I’m 9 years in but doing much much better. Sending you a cool delicate hug.
James Tan If u r a drinker, that may be it. Something is not right with your liver in metebolising the alcohol. If u do drink, try stop it for the time being. Then try take milk thistle for a few weeks to see any improvement. This may help boost your alcohol methobolism enzyme.
James Tan my was exactly like yous but yours is much worst. i am ok now after taking milk thistle with dandellion.
Alyicia James My CU started months after my grandmother died and it was one of the hardest deaths in my family so far. I need help as well. I’ve been to countless doctors with no results, just that my online system was very low and to watch my triggers. I live at the breach and unless it’s spring or fall there’s no way I can go there : (
Kasia Barganska I will have to look into xolair a little more as not heard of it before. James I’m not a major drinker, drink on birthday nights out ect but day to day don’t drink any alcohol. I am also going to look into some natural medicines as some of you have suggested (my uncle is very much into spiritualism ect so is looking into it for me too). And Rachel your description is just how I feel 😟 and izzy I get that itching without the hives too, but at times find that worse as is painful but no one else can see it so hard to get anyone to understand
Joy Seymour Poor women, I feel your pain and understand. Thoughts and prayers for you to heal and recover quickly.
Lina Ibarra Darnell I hope you find relief soon. Your photo took my breath away. My next step is to start Xolair and I’m just glad there is a chance it will go away with it. My dr is actually the one who brought Xolair up first and says he’s seen success
Terry Bean So sorry for you, this condition is horrible. I am starting the process of requesting family medical leave (here in u.s.) because I’ve missed 4 days of work in the past 4 months because my eyes swell so much I can’t see well, not sure how the implications will be handled at work
Joanne Tudor Hi we are in the uk and my son has suffered for two years the only thing that helped were steroids on and off every few months until he stayed on them from November to January and now he is having xolair (omalizimab ) injections once a fortnight from Southampton Hospital. You need to be referred to a specialist who can authorise the injections if you need them we were in a downward spiral until we got the right consultant. The gp’s didn’t know how to help and my sons is autoimmune so no triggers such as food or heat. I really hope you get help soon. We are currently hive free after it being 24/7 for over a year and I think every hive free day is a blessing.
Sue Elshire Hargrave We can so relate to this. I am so sorry – and completely understand. Stress can exacerbate the disease, but it’s not the cause of your hives. I eventually had to quit my job as a teacher. Trying to dress with my body covered, and be moving all day with teaching, I could no longer make it to work. I went on short leaves of absences several times, and it didn’t change that I had the hives they were still rampant. I finally ended up retiring from teaching early, and I only had 33 years in. I was so sad, but since I haven’t found a drug or modality that works for me, I didn’t have a choice! It’s not fun to not be working, however, I can cope much better. On my feet all day as a teacher, the delayed pressure hives and the hives in my feet really made it difficult.
Claire Henderson Sending love and understanding ! I could have taken that photo of myself this week ! Like you I have to work, I’ve found myself not being able to attend vital hospital appointments because taking so much time off work is not good and I need to keep my job. I’ve cut out dairy, caffeine, alcohol, and artificial sweeteners in drinks as this really gives me angry hives. I take antihistimes but to be honest they don’t stop the hives. The only ease I get is from having a soak in a Sea Salt bath and using cooling and anti itch creams x