When my family moved from New York City to Fort Lauderdale in the summer of 1986, we were convinced we had landed in paradise. Cold, grey winters were traded in for endless sunshine and palm trees, and the Atlantic Ocean greeted us with bath-water temperature waves, day or night. Just eight years old, and a lover of the water, I tried to squeeze in as much time as possible in South Florida’s waterways. This pastime, however, also meant exposure to strong sun and blazing temperatures, and unbeknownst to us, would change the course of my life forever.
My family and I didn’t know it then, but the sun and heat would come to be one of the main triggers of Lupus symptoms in my body. Lupus, a chronic inflammatory autoimmune disease that affects more than 5 million people worldwide, can wreak havoc on numerous body systems of patients, including the heart, lungs, kidneys, brain and skin. People diagnosed with Lupus will experience flare-ups (increased disease activity) and remissions and may notice over time that certain factors jump-start an increase in symptoms. With the proper tools, patients can determine the unique triggers that may be leading to an increase in disease activity, with the goal of lessening or eradicating these conditions to achieve a better quality of life.
Unfortunately, the class and clear manifestations of Lupus provoked by my sun exposure would be missed by medical professionals for more than a decade. This is not uncommon, as studies show it takes an average of up to six years for a correct diagnosis of Lupus because the symptoms can mimic so many other diseases.
My warning signs developed slowly, beginning with extreme fatigue after spending just minutes outdoors. In time, severe joint and muscle pain was added to the mix. Heading into my teenage years, my mom chalked it up to growing pains. Then rashes and sores began after sun exposure, and time and time again my symptoms were brushed off as sun poisoning or heat exhaustion, two common ailments often seen in scorching Florida.
It became quite clear my body did not mix well with sunshine, but how do you steer clear of it in a place that averages 246 sunny days a year? I wore hats and stayed indoors until the evening hours, missed countless outings to the beach and pool. In times of loneliness and frustration, I took the risk of venturing out into the heat and paid for it dearly afterwards.
By the time I reached college, I incorporated as many adjustments as possible to limit my sun exposure. But I still had no clear answers to this overreaction to sunlight. That is until I turned 23. As I crossed the street one humid, spring evening, I was struck by a pickup truck travelling about 80 km/h (50 mph). During my yearlong recovery, I experienced similar symptoms as when exposed to sunlight – rashes, sores, fatigue and terrible joint and muscle pain. Then the fevers began and I had a small stroke. Under the care of multiple specialists at the hospital, they ran the gamut of tests to determine what was happening. Three weeks later, a rheumatologist and I stared face to face as I listened to the words, “You have Lupus” leave her lips.
In the two decades that have passed, I’ve spent hundreds of hours researching, collecting personal data, and working with healthcare professionals to help me determine what circumstances activate Lupus symptoms in my body. While those of us with autoimmune diseases have unique reactions, they tend to fall under broader categories. Let’s look at five common conditions that can contribute to a flare-up:
1. Stress
In numerous studies, physical, emotional and psychological stress was associated with an increase in flares and the need for a higher dose of medications (such as steroids). As many as 85 percent of patients surveyed reported stress as a trigger. While researchers are actively studying the effects of stress on the immune system in people with autoimmune disease, it is believed that stress-triggered neuroendocrine hormones alter or amplify cytokine production, leading to immune dysregulation.
“Avoiding stress is not possible but helping to educate my patients about healthy ways of managing stress has become very important to me,” says Dr Meggan Mackay, a rheumatologist and professor at the Feinstein Institutes for Medical Research in Manhasset, New York. Physical exercise, in particular, is an “essential tool” for stress reduction.
Exercise can prove problematic for Lupus patients experiencing severe pain, trouble breathing, fatigue and mobility issues. These should consider other stress-reduction techniques such as meditation and prayer, mindfulness practices, cognitive behaviour therapies, music, pet and art therapy, yoga and breathing exercises.
The executive director of thinkpsych.com, Anton Shcherbakov, says such evaluations can prove vital, especially when it comes to exercise. “For example, you may recognise that heavy physical activity may cause your symptoms to flare up,” he says “In this case, you would want to divide physically demanding tasks into smaller parts to better manage this trigger. On the other hand, if you notice that physical activity actually makes you feel better, you can make sure to integrate some movement into every day.”
2. Sunlight and UV Rays
Photosensitivity and adverse reactions to UV radiation – whether from sunlight or artificial indoor light such as fluorescent bulbs – occur in as many as 70 percent of patients, according to the Lupus Foundation of America. Even just a few minutes of exposure can bring on fatigue, sores, rashes, and fever and, in some cases, these flare-ups can last anywhere from days to weeks. UV radiation can damage cells, and in the process set off an immune system attack.
After we identified the adverse effect of Florida weather on my health, my family and I decided to move to the Canadian border. The colder weather and shade worked charms. While hiding from sunlight and even artificial light every day is an impossibility, Lupus patients can lessen UV damage by using sunscreen of SPF 70 or higher that blocks UVA and UVB rays. They should also wear SPF-infused clothing when spending time outdoors, avoid the sun during its peak hours, cover fluorescent bulbs with light shields that have nanometer readings of 380 to 400, invest in a wide-brimmed hat, and tint car or home windows to block out rays.
3. Food and Diet
Increasingly, people with Lupus say that eliminating specific foods has helped decrease symptoms and fatigue while also increasing energy. Dietary reactions are unique to each individual but often tied to allergies or sensitivities. Not surprisingly, seeing that numerous studies show that an overreactive immune system can cause a propensity towards allergies, asthma, eczema and other hypersensitivities.
Dr Pouya Shafipour, of PalomaHealth.com, says it can be helpful to first remove common dietary triggers (gluten, dairy, sugar and soy) and then slowly reintroduce each to see which may be contributing to symptoms. With that information, a patient can stop eating foods that contain them and get to the root cause of their autoimmune issues.
No one diet is recommended for Lupus because sensitivities and allergies vary from patient to patient. But general recommendations include avoiding saturated and trans fats, too much salt, highly processed foods, and sugar, which is extremely inflammatory.
It is worth seeing a medical allergist for tests. That will scientifically prove what is going on and provide better guidance on dietary adjustments and protocols.
4. Infection
Infections are threatening to patients because they have a compromised immune system, to begin with. Infections are considered one of the common causes of mortality in Lupus patients and are a common trigger of symptoms. Patients may notice an increase in fatigue, joint and muscle pain, fever, rashes, and mouth and nose sores during or right after an infection. With any infection, especially if fever is present, it is crucial that patients be examined by a physician to determine if the root of the fever is infectious due to bacteria, viruses or protozoa, or is a manifestation of increased Lupus disease activity.
5. Pregnancy, Menstrual Cycle and Hormones
Through years of research, science has made the connection between symptoms and hormone levels in the body. Studies show patients reporting an increase in flares both immediately before their menstrual cycle begins (the hormonal surge phase) and during their periods. Symptoms most reported included increased fatigue and pain levels and an overall increase in disease activity. Pregnancy is also considered a trigger for an increase in Lupus disease activity and symptoms in some patients, believed to be exacerbated by hormonal shifts, such as increased estrogen. As many as 50 percent of women experience an increase in Lupus activity during pregnancy.
From Patient to Detective
For anyone living with Lupus, I recommend journaling daily for at least three months. Document each day: how long you slept/napped; everything eaten or drank; time exposed to UV light/heat/cold; supplements or medications taken, stressors (including people); emotional outbursts such as crying; menstrual cycle information, symptoms; exercise; and travel, if any took place. Journaling for more than three years provided me with extensive data on when I felt worse. That helped me come up with a mitigating plan.
An axiom in the Lupus medical community is that “no two cases of Lupus are exactly alike.” Once you determine your unique reactions, you can begin implementing lifestyle changes that can boost your health – and quality of life.
