What the hell wrong with me?: Recognizing my early Lupus symptoms

I was diagnosed with lupus, or SLE, when I was 19, but I can trace my early symptoms to starting around my 13th birthday. In those 6 years, I dealt with tons of random symptoms and illnesses. It sucked not knowing what was wrong with me, and the years of unknown were probably the hardest part of my whole experience with lupus. In all of the years of doctor’s appointments and bloodwork, lupus wasn’t even brought up until the appointment where I was diagnosed.

1. Hives

My first ever lupus symptom was full-body hives with seemingly no cause. The first time it happened, I assumed it was an allergic reaction to grass or laundry detergent. I was covered in swollen welts from the neck down. It was SO itchy and uncomfortable. I popped a couple Benadryl and when I woke up, it seemed fine. Little did I know that this would become quite routine for me. 

I started getting the hives monthly, then weekly, then daily. I was taking Benadryl twice a day and Zyrtec once, and eventually that wasn’t even enough antihistamine to keep the hives away. Finally, after about a year of trips to the allergist, I was able to start an injection called Xolair. Xolair was originally an asthma medication, but it was found to work really well for chronic hives. I stayed on the monthly shots for about 3 years and slowly weened off. Now, I really only get hives if I’m in an active flare or if I’m sick. Looking back, I think the hives were the first sign that my immune system was going haywire.

2. Joint Pain

Shortly after I started getting hives, I started having debilitating joint pains in both of my wrists. The pain was deep and intense. It was something my mom lovingly called “growing pains”. It just meant that I was a healthy teenage girl who was changing and developing. Since “growing” is a part of every teenagers life, I assumed that all of my friends also had these “growing pains”. 

But, these were not normal pains. The deep ache woke me up in the night and distracted me all day at school. I actually used to sit on my forearms during class to cut off circulation to my wrists to hopefully numb some of the discomfort (not claiming to be a doctor but it totally worked!).

After months of continuous pain, I went to the doctor hoping that they could do something to help me. Sadly, they decided that it was a combination of anxiety, dehydration, and worst of all, weight gain. On the bright side, I was prescribed 600 mg of iBuprofen which I borderline abused for years to come!

3. Butterfly Rash

Throughout my high school years, I frequently had what is known as a butterfly rash. A butterfly rash, formally called a malar rash, is facial redness that goes across both cheeks and over the bridge of the nose, kind of making the shape of a butterfly. Mine was always hot the the touch and slightly raised.

Now, when I have a butterfly rash it is bright red and splotchy. However, back then, the way the rash appeared on my skin looked almost like a bruise. Sometimes, it even caused my under-eyes to puff up. 

I believe that this is the reason that doctors did not register what was happening on my face as a lupus rash. It has since evolved to look much more “textbook”.

4. Fatigue

My freshman year of college was probably the worst year of my life. I was so tired all of the time, and the only way I could describe it to my mom and my friends was feeling “weird”. My fingers and toes buzzed with pins and needles. I slept 10+ hours a night and woke up feeling like I never slept. I had a low grade fever almost daily. My heart fluttered in my chest and my eyes twitched. There were times that I fell asleep in class, at the library, in the car. I missed out on my freshman experience because I spent most weekends at home sleeping.

As someone who has struggled with anxiety through most of my childhood and young adulthood, I was afraid that I was feeling this way because of depression or another mental illness. I recalled Cymbalta commercials in my mind and pictured a woman unable to get out of bed, unable to go to work, unable to see her friends. And that’s how I felt. So, I saw my doctor and asked to be put on anti-depressants. This didn’t really help me since this issue was linked to my Lupus, which at this point was untreated.

I wish I could say that I found some medication or hack that has helped my lupus exhaustion. To this day, it is probably my most debilitating symptom. I have days where I stay in bed for hours. After being too active or particularly social, I can need a day or more to recover. The fatigue is relentless and debilitating, but I have found my own ways to live alongside it and still experience my life to the fullest.

Conclusion:

A part of what makes diagnosing lupus so difficult is the wide array of symptoms as well as the irregularity of symptoms. It felt like as soon as I would make a doctor’s appointment for a symptom, it would go away. It made me feel crazy! This is a huge reason why it takes people an average of 7 years to be diagnosed. It is important to trust your judgement and advocate for yourself to friends, family, and doctors.