I have had my conditions since I was 9 years old. Nothing like telling a 9 year old that you’re not allowed to run anymore, or get too hot, too cold, or wear any clothing that is too rough. I have the urticaria’s severely. If I get too hot or too cold, quickly change in temperature, or run, I can go into anaphylactic shock, which causes trouble breathing, my nose stops up, and my eyes swell shut for 2-3 days.
I went into anaphylactic shock so often that I stopped going to the emergency room. I’m in constant severe pain because it is hard to regulate body heat. So I almost always have a type of hive whether it’s from the cold, heat, or pressure. I can’t even change my clothes without getting hives from the friction, can’t put on shoes without hurting, can’t run at all. I have to watch my temperature constantly, especially if I get mad or annoyed because my internal temperature goes up and causes my eyes to get puffy and my face to start stinging.
I have tried about all over the counter meds and even a few prescription steroids, nothing works. Don’t even have any insurance to go see a specialist. So I have to live like this daily. I have to watch what I sit on, what clothes I wear, what the temperature usually is in a building I will be going in, how cold it is outside. Usually no matter what I do I always hurt whether I have hives or not.
My skin always feels like someone is slapping a bad sunburn. I know it says usually people’s feet and hands don’t break out but mine do daily and it makes it difficult and painful to walk or to hold a steering wheel. I even have to watch what liquids I touch or drink cause my hands and lips will swell severely. I can’t even hold frozen groceries.
I have the rare anaphylactic shock urticaria’s and was wondering if with how bad I have it if there is any way to lessen the pain or the swelling, and to prevent anaphylactic shock. I’ve had it so bad one time I had to go to the emergency room even though I went into shock at least once a week and didn’t go, because I couldn’t barely breath and my eyes were swollen shut and my body wouldn’t stop shaking.
Is there anything I can do? I’m 23 now and have been living with this since I was 9, and it has never went away, just lessened sometimes.
Thanks,
Lesley R.
Hivesguy says
Wow, Lesley. I’m really sorry to hear of your struggles with those different urticarias. I don’t have anything new to offer rather than what I’ve already discussed on the site and in the videos (diet and other things). However, I just want to add that I hope you know that you aren’t alone, and I do think things will get better for you over time. Thanks for taking the time to share your story.
Mike Read says
Hi Lesley, Sorry to hear of your struggles with this illness. It sounds horrific. I can’t offer you any advice, just to let you know my thoughts and prayers are with you. Some of what you suffer with rings a bell with my daily struggles, but not all. Hope you find ways to cope better.
Mike
Rebekah says
Lesley I have the urticaria, , exercise induced anaphylaxis also. I have tried meds upon meds.. It appears you are more sensitive than I am. Like you, I can’t exercise, be outside go to the beach. This impacts all areas of my life I struggle just doing day to day housework. I just stopped all meds including Xolair (Omalizumab) as it didn’t really help. I bought the Hives guy book and I’m now on my 2nd week of the low histamine meal plan. I am seeing improvement in the small things. I can now take a hot shower and the swelling, outbreak and duration are less than before. For me the change in food is my last hope. Not sure why but since I changed the way I eat my eczema is outta control that could just be from the stress of the diet. It take a lot of work and commitment. Eating @ work is the biggest pain. Try the low histamine diet it may be the one thing that works for you. I do recommend stocking up on epi-pens before you start. My hives got a lot worse when I stopped my meds. For last two weeks I have been pretty miserable but with each day it gets a little better and I’m optimistic.
Wishing you the best,
Rebekah
Tom says
Hey,
I just left a my own post describing a similar situation. I initially started with just cholinergic urticarial and it progressed until about a month ago, I started exhibiting all your symptoms- Hives with laughter, food, going to the bathroom, every little activity, down to just clothing, exercise shortness of breath, being unable to shower and most recently, dermatographia.
At this point, I had tried everything; diets, saunas, forced exercise, probiotics, etc to no effect. I said enough is enough because I realized that my CU was exhibiting a runaway effect and morphing into other urticarias. So I did a ton of research on medical therapies and realized my docs hadn’t gone far enough or were totally clueless about the disease. So I took my research to the immunologist and forced them to start me on cyclosporine. Been on it 10 days and since then, I get no hives at all unless I’m exercising in which case, I still get the hives and slight anaphylaxis. The dermatographia persists too. I’ll eventually have to add steroids too achieve remission but I’m holding out as I have no insurance and all these drugs and doc visits cost money. But it was worth it. I can laugh now, walk around, drink hot tea, etc. Just no strenuous activity, hot showers and persistent dermatographia.
I’m all for natural remedies but if you’ve exhausted them all like I have, then research the drug remedies and pester your doctor. I’d post links but then they’d get this post categorized as spam. However if you type in chronic idiopathic urticarial (the umbrella term for our condition) lots of medical research articles and reviews with treatment algorithms and data for other treatment options (cyclosporine, tarcolimus, methotrexate, IVIG, UV therapy, etc)
I cannot understand your pain but I know, no, we know what pain is on this forum. Take a look at those treatments and articles, as well as hives guys forum, videos, and book. Don’t lose hope friend.