How identifying my lupus triggers helped me set my path forward

Sun, heat, and stress have often led to my symptoms or their increased severity

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by Marisa Zeppieri |

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Have you noticed that certain stressors, environmental factors, lack of sleep, or foods seem to cause lupus symptoms to suddenly express themselves, or current symptoms to increase in severity? If so, you may have identified a trigger.

When I was diagnosed with systemic lupus in 2001, I’d never heard the word trigger used with chronic illness. Today, thanks to social media platforms, a plethora of books, an abundance of resources, and my own research and journaling, trigger identification is a crucial tactic in helping me stay as healthy as possible.

If you’re newly diagnosed or going through the process of getting a diagnosis, let’s take a step back and unpack what triggers can mean in the chronic illness world.

Through my website, Lupus Chick, I’ve engaged with hundreds of thousands of people over the past 14 years. Many can pinpoint a specific event or illness that led to their lupus symptoms. These events can be considered triggers and can range from severe illness or pregnancy to physical trauma or overwhelming stress — basically anything that affects the immune system and health.

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While I had clear lupus symptoms growing up, I wasn’t diagnosed because they were mild and came and went so randomly. But things changed after I was in a severe vehicular accident at 23 years old. Three weeks into my yearlong recovery, I had fevers, rashes, mouth and nose sores, body pain, trouble breathing, and then a small stroke. The hospital specialists treating me said they believed the vehicular event and my severity of symptoms were the triggers to lupus fully expressing itself in my body and becoming “seen” in bloodwork — and so, I was finally diagnosed.

I had that initial trigger figured out, but what I’d learn over the next five to seven years (and am still learning here and there today) were additional triggers that bring out my symptoms or flare-ups.

My journey with triggers

I learned about the majority of my triggers through extensive journaling. I bought a notebook, and every day I’d fill a page or two with everything I did, ate, and drank. I journaled about how much I slept, if I was in the sun, if I had any emotional or physical stress, where I was at in my menstrual cycle, and if any new foods, medications, or supplements were added. I’d also note the temperature (of my body and outside) and my symptoms on that day, as well as their severity.

It took a few months for me to see clear signs, but eventually they were jumping off the page staring right at me. Sun, heat, and stress were my three biggest triggers. I was living in Fort Lauderdale, Florida, at the time, and even five minutes in direct sunlight or heat would cause a fever within a few hours, as well as body rash, mouth and nose sores, and sometimes — if I was in the sun for long stretches — a flare for months, or even heart arrhythmias that would land me in the hospital.

After I pushed my body a number of times and paid for it dearly, I made a hard choice: No more sun and hot temperatures. My health and life depended on it.

Stress is another major trigger for me, whether physical or emotional. I’ll feel it when I’m pushing my body for days on end with little sleep (like when I’m on vacation) or dealing with the loss of a family member, which I learned after my grandmother and father died. These events would lead to an increase in symptoms and their severity.

Additionally, certain lupus symptoms would get out of control a few days before my menstrual period. It happened like clockwork monthly, and I realized it only once I journaled long enough to see the pattern.

Even today, I still discover a new trigger here and there. The truth is, I’m not always going to be able to remove triggers 100% from my life, just as I can’t fully escape the sun or stress. But I can learn how to limit triggers in ways that work for me. And so can you.

If triggers are a new concept for you when it comes to lupus or any chronic illness, I recommend first that you grab a notebook and start on your journaling journey. I guarantee that if you’re consistent, in just a few weeks to a few months you’ll reap a plethora of information that can help you better control your health.

Have a question or comment about triggers? I’d love for you to share it in the comment section below.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to lupus.