Hi I'm only at the start of my journey, developed hives 8 weeks ago and have had them everyday (apart from 4days following steroids). I've had two very bad flare ups, one when I first got them and this last week. Covered head to toe and have swelling to my lips and eyes.
I'm waiting for blood count results and am considering paying private e lynch for allergy test asap.
I just wanted to know if anyone has had to give up so r k as a result? I've had 2weeks off and really worried because I don't want a poor sickness record and my job is full on! But unless things improve dramatically I cant see how I can go back to work because I can nearly get out of bed! (Antihestimine and steroids arent working now).
Any advice much appreciated going out of my mind!!
I've gone through absolute hell in the last 3 years with my hives and angio oedema. All I can say is Don't give up, really don't give up!
A lot of advice is going around on here and I've tried it all and it seems the only real cure is to change situational/environmental/health habits.
I drank a lot of alcohol from having a stressful job as well as smoked a lot of weed to chill me out at night and the culmination of stress, overworking, alcohol, being run down, lack of sleep, and lack of exercise completely destroyed my immune system.
Since contracting hives I have stuck to a fairly healthy diet (not Over the top), I can't really drink ANY alcohol otherwise I flare up, and try to do as much exercise I can (but this in turn gives me hives so it's a fine balance of doing this when you don't feel tired/run down).
Now all this said - my hives are 100% worse now during winter/the colder months in the UK and as soon as I go on holiday whether it be to Norway or dubai or Thailand or wherever - my hives completely dissappear. I can drink whatever I want and do whatever I want. The only time they reappear and a flare up happens is if I have a lack of sleep and am feeling run down and have drunk a LOT of alcohol. Strange right?
Fexofenadone hydrochloride 180mg is what I take and I would say about 80% of the time it works - but as soon as the major immune system dampening factors come in (stress/tiredness/being run down) they will only work about 40%.
Hope this helps and any other advice ping me a message
I was working and had small children the first two times I went through this. This time I am not working yet because me moved a year ago for my husband's job. I honestly don't know how I funtioned. I took it day by day. I worked in a hair salon and I looked and felt awful. My boss didn't care as long as I made it to work but I just wanted to cry and sleep.
You were smart to join this forum. I has changed my life at this point. I learned (&I am still learning) about leaky gut and I stopped eating gluten. Within 3 days my hives were noticeably less. Within 3 weeks they were/ are totally controlled. I continue to take very few meds in the morning and at bedtime and during the day I've added Vitamin D & liquid B-complex drops.
The other day I took 2 bites of a doughnut & I got hives on my stomach and sides. So going off gluten free diet is not an option for me.
Give it a try. There are other people on here who know a lot about it and can offer much better advice than me. Good Luck.
Thanks for your response! I started an elimination diet a few days ago, although I seem to react to anything I eat but persisting to give myself chance to detox etc.
My job is a very stressful job so I am really worried that if I push myself to go back I'm not going to fully recover. Plus part of me wonders if I've developed this as my body's way of telling me to slow down. Is leaky gut linked to stress at all do you know?
Yes!! If you are able to take sick leave or time off maybe you should consider it. Once you heal your gut, you will feel totally different. I hope one of the ladies that helped me sees this and can offer their advice.
I could not control my hives with any amount of medicine. Steroids helped when I broke out this last time in July but I feel awful on steroids and have learned they are so bad for out gut. They are necessary sometimes though, I will say.
When I found this forum I was beyond desperate. I could not sleep or eat. I got my son off to school and picked him up. The rest of my day was spent in misery. I was also doubled over in pain whenever I ate. I started eating rice (GMO free), eggs, hot water with lemon (this was so comforting), apples & pears. I also eat potatoes & corn grits & avacodos. Whole and fresh is what I stick to. Fresh chicken, salad, squashes,olive oil. I just bought some salmon because I need something different.
Thanks for replying! Your story sounds similar to mine in that leading up to this I haven't really been looking after myself that well, drinking, smoking, late nights, no exercise etc. Plus for as long as I can remember I've had a real love of junk food!!
It's mad that I've even thought of giving up work already and it's probably just because I feel so overwhelmed and depressed by this constant problem! But a part of me dies wonder if actually I should take time off and look for less stressful work! But it would mean a massive pay cut which would bring its own stressors!
I'm on fexofenadine but only 120mg and it doesn't seem to be doing much and since using it alongside steroids it eases things for a few hours then it comes back worse!
You e inspired me not to give up but I may have to give in and take s bit longer off work to really focus on getting better! Dread the thought of going back like this! Hope my gp will sign me off!
That's good, I've stocked up on most of that stuff recently but can't bring myself to eat anything ATM. It's horrible feeling like you're just surviving not actually living! Missed bonfire night with my 4 year old yesterday as I just couldn't move out of bed! The steroids got it under control last time but don't seem to be doing the trick this time, it's coming back worse once they wear off.
I will do a bit more research into leaky gut and will have to swollen my pride and take extended sick leave. I just feel so guilty being off but I need to get over that and put myself first!
That's ok if you missed the bonfire. I promise you, better days are coming. I know I sound crazy but I know exactly how you feel. Our body is at war. Dramatic yes. But it makes sense. Bone broth is anot her huge help. I have only made mine from chicken so far but when I was doubled over in pain and sipped on it, I know I was getting nourishment. I've made mine from fresh chicken and also from a roasted chicken and the juice I roasted it in (I just poured it in the pot with the bones and the water& some herbs)
Before this forum I had no idea that this condition was so prevalent and that it could be such a problem.
i have never missed work because of this but I am in a very active job as I do Recreational Therapy with seniors in a facility.and after doing exercise programs and and other acrivities, I know I will be uncomfortable for a while.
people here do not seem to understand the condition, not even my doctor!
The UK is not very good at recognising Leaky Gut Syndrome as it came out of US studies. To find out you have it you need to find an alternative to GP to get referred for a Gut Permeability Test (Not Stool Testing). I did mine through a nutrionalist. If you can do this the lab will do a PEG 400 test using polyethylene glycol. This is done by swallowing a liquid containing special molecules that the lab can pick up in the urine vial you have to send after collecting it over a 6 hour period (internet has this info as well). Normal is about 374 (molecular weight fraction) mine was 638 which indicated I did have Leaky Gut. The small intestine gets minor damage that causes folds which allow very small particles of food into the blood stress which triggers the immune system to fight them off. What you both are doing regarding gluten free is what is recommended BUT be very careful about following a Leaky Gut Diet because alot of the food is high in histamine, like lentils, nuts. My nutrionalist said stick to the low histamine diet, stay away from wheat products if possible, no milk but rice, oat, lactose free milk is ok (not soya its high in histamine). Basically use very fresh meat, fish, fruit and vegetables and rotate the food you cook or eat so there is a two day gap between. She explained this saying repetitive food leaking out of the gut is what can trigger the immune system. Although my gut has got better, I still rotate food. The nutritional advised taking L-Glutamine powder (1 teaspoon in water), a very good multi-vitamine and a really good pro-biotic with all the goody bacteria possible (yoghurts won't hack it). Siobhan it sounds like you may have urticaria vasculitis or urticaria oedema and will need testing for this from a good specialist. If you live in the UK you should try to get your GP to refer you to a Dr Sabroa, Dermatologist at the Sheffield Hallamshire Hospital. She is NHS but you would have to travel to her. She is one of the best urticaria specialists in Britain, extremely caring and knowledgable and I would hightly recommend her to you. I would also recommend bathing itchy areas with strong saline solution and try drinking 1 teaspoon of baking powder in water during the day. This is to keep your body from becoming too acidic.
Look further down the discussions because I've outlined some of the things I think you should know, good luck and remember stress is a trigger, chafing of clothes on the body is a trigger, cold or heat can be a trigger (look at Marcus) and be very careful you don't slide into depression. If you feel that you are not enjoying things you used to, simple things like reading or watching TV seek some advice from your GP. There is an anti-depressant called Doxepin which is very good and has anti-histamine within the med.
Thank you very much for your response and advice! I'm avoiding high histamine foods and cutting out wheat/ dairy. Do you know if rice cakes are ok? Is the pro biotic in tablet form then if yoghurt don't cut it?
Also I'm amazed that you haven't needed any time off, that's why I worry am I overreacting but honestly I can't manage more than 10 min out of bed!
I've never heard of chronic hives before so I'm shocked to see so many people affected! I am considering that stress has brought this on but I also don't want to admitting it!
Rice cakes fine and I didn't have time off because my hives didn't appear on my face some in my scalp, temples and behind my ears so not really noticeable.
Probiotics in tablets and check they have all of the benign bacteria some only have a few. Holland & Barrett in UK have shops everywhere and on line and have the good ones.
I'm now 10 months in to my first Urticaria experience, please don't give up! Mine started at a very high stress time in my life, I took voluntary redundancy (not very voluntary) and my cat was diagnosed with a brain tumour, I don't drink or smoke and eat relatively healthily. My first piece of advice is get yourself referred ASAP, it can take months, I saw a dermatologist first off who was useless and wasted 5 months with him, he referred me to an immunologist who has done all the tests etc and I'm just waiting for my follow up appointment next week. You're on a very low dose of Fexofenadine, I take 180mg 3 times a day (I can take 4 if I need it), 150mg Ranitidine 4 times daily and 10mg Montelukast at night, I can also add Cetirizine in too if I need it. Speak to your GP if you're lucky and they're read up on it even better, there are other drugs available but they tend to be administered by the consultant. All of this will help you manage the condition while they try to get to the bottom of what is causing it. I still don't know but they suspect it's just autoimmune related, I've got an under active thyroid (also an autoimmune) and I read you're 50% more likely to get another, I also have allergic asthma, hay fever and had eczema as a kid so I tick a lot of boxes. There's a great UK Facebook group too, who have been amazing when I've been at my lowest. Good luck x
Absolutely!! One thing I would say is just stay away from anti depressants, they really are not worth your time, money and overall wellbeing.
I haven't been doing much exercise whilst having so many hives over my body, so have been really getting stuck into it recently - despite how it gives me hives as a result - it's about staying strong, remaining calm and keeping positive as you will not always have this urticaria. One day it will go. And it is up to you to change your daily eating/health/environmental habits....only you can do this.
For example - I have had 2 swollen wrists - one blistered up and hurt a lot, huge hives on my bum, legs and arms which itch like crazy and are then sore, and this was all ony week off - even through all this You have to stay strong and positive with an end in sight. I believe if I do enough exercise and maintain a heath lifestyle (no smoking and no booze!!!) I will be cured. It's ALL about your immune system being weakened - it's just a matter of time and your energy that will heal it and ultimately stop these hives.