The Story of My First Lupus Flare

It was a beautiful day in Munich. My husband and I were both 25 years young and excited for our first real holiday since moving abroad to Germany for his job. We had traveled to the city by train for the chance to behold its gorgeous Christmas markets. I had created a massively optimistic itinerary for our day.

A beautiful winter day

As a southerner, I wasn’t fully prepared for what it would be like to spend the day outside in 19 degree weather with light snow fall. But I had layers, a big coat, winter boots, finger-less gloves, a magical love for the snow, and determination. Spurred on by spiked coffee, hot chocolate (also spiked - Germany does love a dash of liquor in their beverages), Glühwein (warm mulled wine), and all the other warm food and drink that the Christmas markets had to offer – we fueled up and explored to our hearts' content.

We wove in and out of the huge rows of Christmas market stalls; we didn’t want to miss a thing the city had to offer. We visited a famous beer hall, a tiny book store, a Starbucks (because my American heart so missed the small treats from home), a beautiful church, and several lovely parks. It was such a novelty for me to watch the snow fall around us. I absolutely thrilled to see new things and learn about another culture.

As the winter day began to dim, we planned to go back to our hotel and rest a bit before heading back out for dinner. We were nearing the end of our many miles, somewhere just over 10 mile mark, which was a normal number for us since moving to Europe and walking every day, when I started to notice some things that weren’t quite right.

My flare symptoms burst free

Remember those warm winter boots? Well, the first thing I noticed was that they seemed too heavy. I mean, they had to be too heavy, because why else would they be making my knees hurt so much? That wasn’t normal. Something must be wrong with the boots that I could barely lift off the ground for my next step.

Then I noticed how strangely tired I was. I accidentally teetered off the sidewalk into the grass and ended up firmly holding onto my husband for the rest of the walk. (And no, I didn't consume that many spiked beverages.) While I’m used to lupus fatigue now, at the time I had never felt anything quite like it, even during previous sickness. It was almost like someone was filling my body up with cement – causing me to begin to grind to a stop.

It also felt like my brain was on a dimmer switch suddenly turned low for the first time. My thoughts were bumbling around, bumping into each other, and making it especially hard for me to communicate just how difficult things were becoming.

We finally made it to our hotel room and I sat heavily on the edge of the bed and then kind of fell backward. My husband worked to get the winter boots off my feet so that I could lift them onto the bed. Suddenly I realized, as my body was beginning to thaw out from all the hours in the cold, that my hands hurt. A LOT. And they were swelling! We almost couldn’t get my wedding ring off, but thank goodness we did because the swelling was only beginning. Little did I know it would be almost 2 years before I’d get to wear that ring again.

It felt like an emergency

With my boots and ring off, I laid on the bed for about half an hour in a bit of a stupor. Finally, I tried to stand up to go to the restroom but found that I couldn’t. I cried out in pain when I tried to put pressure on my knees. They hurt so much - like they were full of jagged glass - and they were also swelling. My husband helped me to the bathroom and I still remember looking at that hotel wall, wondering what was happening.

I spent the next few hours crying in bed, unable to say much that was coherent. My husband got take-away pizza and we both wondered what to do. I hadn’t broken a bone or anything else that would make it a true emergency, but we both felt like we were in way over our heads. And, once I realized the pain had settled in, I was feeling too panicked to figure out our next steps. My life felt like it had suddenly gone off the rails.

Before, and after

We managed to get back home from Munich, but we didn’t enjoy the rest of the trip very much. I was able to see a rheumatologist in Germany the following month but, after he blamed my mental health and extra weight, I was genuinely confused. I wondered if it was really my fault – and also wondered how anxiety could cause my fingers to swell, my face to burn, and my lungs to hurt?

I had no idea what to do. I didn’t have a support group, adequate treatment or pain management, or even friends who spoke my language. I languished, which did not help.

Over a year later, after moving home to the USA, I was diagnosed with lupus. It was then that I started to see all the small signs that happened before that terrible flare and understand what happened to me afterward. I also realized that the stress of the move and the first prolonged exposure to such cold weather were key elements in lighting my lupus on fire for the first time.

Unfortunately, the year and a half of suffering in between that flare and my first effective treatment caused harm to my body that I’m still trying to undo. It’s been over 8 years since that day and I still ache for that confused young version of me. I wish I could go back and tell her it’s not her fault. I’d also tell her to run, don’t walk, (figuratively) for the treatment she needs to heal her body.

Question for the reader:

What happened during your first lupus flare?