I’m just a girl – Diagnosing part 6 (Chronic Idiopathic Uticaria)

The term “hives” immediately brings to mind a body full of welts. I was always under the impression that they were caused by two things, anxiety or skin allergies. Growing up, I never suffered from hives or frequent rashes. My main allergy was/is dust. It causes my nose to run, eyes to itch, and a sore throat. Because of this, I’ve been fairly diligent with cleaning and trying to live, or at least sleep, in areas without carpeting. That’s it though. No other allergens ever bothered my skin or immune system.

Allergies are a peculiar beast. People differ drastically with their triggers. Not only with what sets them off, but also the severity. There are more common culprits, such as pollen and foods, but there are also outliers, like latex and even sunshine. Popular culture shows allergic reactions as anaphylaxis. There aren’t many conversations or images of someone just being itchy or tired. No movies where a character can’t figure out why they look like they’ve been through poison ivy every day. 

Even with entire medical specialties dedicated to allergies and the immune system, we still have very little knowledge around the “why” and “how” of allergic reactions. People also tend to develop allergies as they age, which adds to the mystery. An example being, I went from loving shellfish to having a pretty severe allergy to them at some point in my late teens. No rhyme or reason for it. 

About a year into my bent body journey, I began to get hives. I didn’t know they were hives. I thought that I was just the unfortunate victim of: Bed bugs? Mosquitos? Spiders? Fleas? Crappy detergent? Bad lotions? My itching was always worse at night and the welts that would appear, varied in shape and size. I noticed that my skin was becoming more sensitive. Adhesive from items like band-aids would cause burns and rashes. Any actual bug bite caused alarm with its red angry swelling.

At a certain point, the nighttime itching became unbearable. My skin was already tender and painful from having small fiber neuropathy. Throw onto that, such crazy itching that I bled. Honestly, trying to explain the mix of numbness, searing fire, electrocution, itching, and ache to people… it was impossible. The symptoms are conflicting, yet all happening at the same time. Doctors hate that. They automatically treat you as though you are being both dishonest and unreasonable. 

I was able to secure an appointment at an allergy clinic after a few months of consistent blood work showing elevated IgE levels. My first appointment was a typical disappointment. The diagnosis was idiopathic urticaria. The treatment was extra doses of over-the-counter antihistamines. At one point, in addition to daily allergy meds, I was taking 8 50mg doses of Benadryl. When those didn’t work, the next treatment was prescription antihistamines. Followed by light immunosuppressant drugs. Six months later, still suffering, now with additional symptoms from the medications, I was approved for a weekly intramuscular injection. This was the supposed king of allergy relief. If it didn’t work, there were no other options. 

Between excited and scared to start the treatment, I leaned more towards excited. Finally, I’d be off the bunches of ineffective pills. I had to sign away my right to sue, acknowledge possible dangerous side effects (such as death), and arrange to be in the clinic for two hours each week for six months. Nights without crying out of desperation and itching? It seemed worth the risks and inconveniences. My first shot worked like a miracle. I had ZERO hives or itching for an entire week. I was elated. It worked! One of my broken body issues had been solved! There was hope!

You know what’s coming. Chronic conditions don’t just get fixed. Unfortunately, science has yet to catch up to the body’s creative ways of existing. By the second shot, my hives had come back. It wasn’t worse than before, but it certainly wasn’t better. I had tasted the memory of what life was like pre-hives, only to have it quickly disappear. This put me in near total despair. 

I was dealing with so many medical issues at the same time. They all felt as though they were attacking me at full force. A hundred percent of my time and energy was going into making it through the day and night without ending my life. Hives were the icing on the disgusting cake that was my existence. I went to different allergists and even immunologists, all of them said the same thing, that there was nothing that they could do. I had tried everything. The best they could suggest were strong immunosuppressant drugs that would trick my body into producing lower amounts of histamine. I was told that those medications come with very serious side effects and risks. Plus, they might never work to the point of “curing” my hives.  

Chronic idiopathic urticaria has no cure. Like so many understudied conditions, there is no good research or guaranteed treatment options for sufferers. Patients are written off by doctors who find their complaints tedious and vague. Getting an official diagnosis isn’t as difficult as other medical maladies. It’s almost become a catchall term for any misunderstood rashes or hives. 

Here’s how I coped with getting through the beginning of it and what I do now. I stayed off the immunosuppressants. The risk wasn’t worth the possible reward. I leaned heavily on antihistamines as I fiddled with my diet, environmental triggers, and other medications. Then, I began to cut back on the antihistamine medications, even as my suffering increased, because I was familiar with the rebound effect. Followed by, meticulously figuring out which manufacturer’s pills caused more severe side effects (Different drug manufacturers use different levels and types of fillers for their meds. Then, equating that to immune response). I started learning how everyone’s histamine levels increase at night and pre-dosing before bed. I took notice that my hives are less aggressive when I am active up until I fall asleep, as opposed to resting for hours before. Not sure why that one works for me, but it does. I also use cold water, lidocaine, CBD, and other topical calming products for persistent itching. There isn’t one solution. I just use these techniques and have fewer flares. I think it is extremely important to tailor your treatments to your body.

If you are suffering from any type of inexplicable physical irritation, I feel your pain. From tinnitus to visual floaters to itching and so much more, you deserve relief. You deserve empathy and active listening from medical professionals. While we may need to take healing into our own hand for the time being, we have to hold out hope that science will find more effective ways to help us. Even if that means we have to constantly fight to be seen and believed. 

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