My Pain Explained: Dengue Fever

When I sliced my toe on a rusty grate during last year’s Lunar New Year fireworks in Vietnam, I never thought it was the beginning of a long saga that would end with a dengue fever diagnosis.

When it happened, I immediately chose to ignore the bleeding toe and focus on New Year’s Eve fireworks instead. Breathing through the burning and the pain to watch fireworks seems like a mistake in retrospect, but nowhere near as impactful as the rest of them I made that year.

After the light show ended, I took a good look at my injury and saw that the grate had pierced my toenail and cut diagonally across the side of my toe, necessitating a tetanus shot and a lot of limping. Thankfully no stitches.

My Vietnamese friends were aghast.  The local beliefs surrounding Tet, Vietnam’s Lunar New Year, include the fact that what happens around midnight on Tet eve dictates the tone and spirit of your coming year. This is why, as I noted in my long roundup from last Lunar New Year, the person who crosses the threshold into a person’s house at midnight must be compatible with the new year’s astrological sign.

My Vietnamese friends urged me to take care during this Year of the Snake, and predicted that it would be fraught with health issues. After all, it started badly, with an inauspicious blow to my general health (and my toe). Business-wise it could be a success, they insisted, but in terms of personal wellness they were worried.

I laughed it off. When I climbed Agung and Rinjani in Indonesia in 2009, I lost several toenails and much of the skin off the back of my heel. Plus, I’m also fairly clumsy. I’ve been known to walk into walls when not looking, to trip over sidewalks, to have an alarming amount of near-misses over the course of my life.

But my friends were unrelenting. This injury was different. This was a harbinger of a trend for the coming lunar year. I would, they asserted, anxiously await the day that the Year of the Snake was over.

They were right.

How it began for me

When I created this site, I decided to do state of the union -style posts once a year, because I wanted the blog to be a place where people could learn about food—not read about my health complaints. So it is for this reason that when I started losing clumps of my hair in late February 2013, I never wrote about it.

A month later when I stopped being able to bend my hands or knees in the morning without considerable pain, or look at bright light, I didn’t mention that either. I kept up my usual schedule in Vietnam, exploring the Mekong and surrounding regions and walking around town for hours a day.

In May 2013, after flying to England to visit my family, I could barely walk down the street without feeling exhausted. Alarmingly, when my leg or arm was itchy and I scratched it, I’d develop lines of bruises, colouring the spot where nails had met skin.

As the summer went on, I sleepwalked through my existing obligations and plans—conferences, meetups, interviews and more. I found myself getting sicker and more listless. My immune system did not cooperate with anything I did; every cold or virus seemed to latch onto me stubbornly, and most of my days were obfuscated by a cloud of exhaustion.

The doctors I saw in North America or Europe were unhelpful, even infectious disease specialists. One suggested that I was just stressed. I had to tell him, “listen, as a former corporate lawyer, I know stress very well! This is not stress. Something is wrong with my body.” But I was dismissed, my symptoms were minimized, and I was told that I just “need to relax”.

Thanks?

In actuality, the pain and hair loss had started at a time when I was the least stressed in decades; I was in Vietnam, loving my exploration of the city and its soups. One doctor thought I had lupus, and to be fair many of the symptoms lined up, but tests for that condition gave no indication that I might have it.

In her excellent book, Doing Harm,  Maya Dusenbery notes that “the difference between a crazed neurotic and a seriously ill person is simply a test.”

And not one doctor I saw thought to do a test for dengue, despite my being in Southeast Asia for years, where it is prevalent.

Not knowing what was going on with my body, my exhaustion and pain, and keeping it all quiet online meant that I struggled to explain why I couldn’t see friends or go to events. I spent August in San Francisco in a haze, my joints and fatigue worsening. I “looked” fine, but I was not at all fine.

I confided in my close friends, acquaintances, colleagues, and more, corresponding with many of them to brainstorm solutions. Before doctors ruled it out, I was connected to a woman had lupus, who shared coping strategies and foods to avoid.

And I was given the recommendation of a book that calmed my brain down considerably, Full Catastrophe Living, written for those dealing with the stress and exhaustion of chronic pain and fortuitously updated days before it was suggested to me.

By October, when I was heading to India with my mum, I felt like I was hanging on by a thread. We did have a terrific time in India, exploring the chaos and colour of Rajasthan in a few too-short weeks. But I did still get sick again and again, and much of the trip was clouded with pain. By the time I flew home to Canada, the airline stewardesses took one look at me as we boarded the plane and then cleared out the back row and insisted I sleep.

I was tired and confused and tired of being tired and confused.

And then, I figured it out.

Yep, it was a mosquito-borne virus, dengue fever

⚠️ For a post all about dengue fever, including symptoms, treatment, and possible hope for eradicating it and the mosquitos that spread it, please see here. 

I kept going back to February when it all began. Earlier in the month I was supposed to go to the Mekong, but I woke up feeling so sick and tired that I couldn’t budge. I had a splitting headache and it felt like someone was pressing on my eyeballs; nothing relieved the pain.

I thought I had a bad flu and I postponed my visit. My “flu” cleared up a few days later for the most part, though the headache took longer to go away. A few days later, when I was visiting Vung Tau with my friends, I developed a strange rash all over my stomach.

It wasn’t itchy. It was just flat red dots, a maculopapular rash that appeared in constellations all over my torso and around my belly button. I remember my friends all gathered around me at the beach, awkwardly peering in at my stomach. (We probably confused the passersbys too).

We went with heat rash, and quickly forgot it existed. A few days later it was gone. What could have caused the rash and my flu-like symptoms and then all the tiredness, joint issues and pain?

Dengue.

Interestingly, that’s exactly why two of my friends were in Vietnam—they had gotten dengue in Bangkok and were in recovery on their visa run. Many months and fruitless doctor’s visits later, I Googled “dengue rash stomach” and saw exactly what was on my stomach in Vung Tau. And then I looked into what happens when you don’t take care of yourself when you have dengue. Those who have experience with it will know that the disease is not really treated per se; much like mono or glandular fever, treatment involves hospital visits, hydration, and rest. In dengue’s case, you are also supposed to monitor your white blood cells and platelets, both of which can be dangerously low when in the throes of its grasp.

I learned that when you ignore it as I did, it starts wreaking all sorts of other havoc on your immune system, on your joints and on your general state of being.

I went to a tropical diseases doctor when I was back in Vietnam and shared my thoughts. They confirmed that dengue is almost certainly what had happened, which jived with a February infection and my subsequent blood test results for antibodies, and earlier labs that showed a lower-than-normal white blood cell and platelet count.

Dengue fever is caused by a mosquito-borne virus that infects an estimated 390 million people every year. Each year it also kills about 25,000 people, leading the World Health Organization to describe it as one of the top 10 threats to global health.

So, after many months of not saying anything I’m writing this post to reiterate what not to do when you get dengue. Or, put another way, when in dengue-prone areas and having symptoms of the flu, if you then see a rash on your person GET THEE TO A DOCTOR.

I wish I had gone to check it out, and could have then taken care of myself properly.

Please don’t do the same.

-Jodi

2021 update: Dengue led to Mast Cell Activation Syndrome (MCAS) for me

The fatigue, the hair loss, the joint pain, and the depression and anxiety are all quite devastating but from my non-scientific poll of many friends who have gotten it, vary from person to person. For me, I had new immune overactivation that never went away.

It’s a condition called mast cell activation syndrome, something we are also seeing post-virally with Covid-19. Some patients following a Covid infection are “stuck” in this hyperinflammatory state. I wrote a very long resources page for this condition given that it is more and more prevalent. You can check it out here.

I did return to Southeast Asia, and then moved to Oaxaca, in Mexico, before my life fully went off the rails health-wise. So if you get sick with some of these symptoms, I urge you to please get tested for dengue fever, and take more time to rest than you might want.