This is going to sound strange and I hesitate to even say it…but after 10+ years of diagnosing and caring for lupus patients, I feel like I can “smell” lupus. It’s weird, I know. But when I’m approaching a consult, whether in the clinic or in the hospital, my lupus-spidey-sense gets activated if the patient has lupus. When I teach young doctors-in-training and listen to their long list of possible diagnoses, I get excited but also impatient, waiting for them to reach the same conclusion I’ve already reached.
Now that’s not to say that I’ve never been wrong. But it’s really just about pattern recognition. The tricky thing is that there are LOTS of patterns that are possible with lupus.
Common lupus symptoms that look uncommon
Everyone with lupus is different but after seeing many lupus patients you start to see many common symptoms and patterns. Yes, the “flavor” of those symptoms are unique to the patient, but there are some common underlying themes. For example, many have heard, or maybe even seen, the classic Lupus Butterfly Rash, but not every butterfly rash is the same. Some people may have the rash extend down to their chin or up to their forehead. Some don’t get facial rashes but instead get rashes on their chest or fingers. It takes rheumatologists thousands of hours of work and hundreds of patients (maybe even thousands??) to see and learn how to identify all these nuances.
When someone is in the midst of lupus testing or when they have just been diagnosed with lupus, it can be overwhelming. The internet can provide both fear and reassurance, but at the end of the day, it is getting in touch with your own body that will teach you the most. Lupus patients need regular testing and medications, but none of that is nearly as important as knowing what your body needs. In today’s video I go over all the most common symptoms seen in lupus, but it is far from an exhaustive list. Before you can actively participate in your care and have productive conversations with your doctor, you need to have an understanding of what is happening. My aim is that it is a starting point. I hope this inspires some introspection and conversations!
In good health,
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