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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Why do most doctors only believe that you are having a lupus flare if you have the butterfly rash or joint pain and the blood work shows no?

A MyLupusTeam Member asked a question 💭
Gaffney, SC
April 9
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Symptoms of Lupus Read Article...
A MyLupusTeam Member

Our disease is uncommon, Cynthia, and as it's still poorly understood, many doctors (even rheumatologists) are unfamiliar with it. You may want to consider a second opinion if you're not being heard. A rheumatologist at a university medical center is usually the best bet, as they're more familiar with and knowledgeable about lupus.

April 10
A MyLupusTeam Member

That’s what I had to do, get a second and third opinion before anyone listened to me. The same happened to my uncle.

April 10
MyLupusTeam

Why do doctors seem to focus on the butterfly rash or joint pain when diagnosing a lupus flare, even when blood work doesn't show inflammation?

The butterfly rash and joint pain are among the most recognizable and common symptoms of lupus, which is why doctors often look for them. The butterfly rash is considered a key Show Full Answer

Why do doctors seem to focus on the butterfly rash or joint pain when diagnosing a lupus flare, even when blood work doesn't show inflammation?

The butterfly rash and joint pain are among the most recognizable and common symptoms of lupus, which is why doctors often look for them. The butterfly rash is considered a key symptom that helps with diagnosis, and joint pain affects close to 95 percent of people with lupus.

However, lupus doesn't cause the same symptoms in everyone. It's entirely possible to have lupus or experience a flare without having a butterfly rash or joint pain. Flares can include many other symptoms like:

* Fever and body aches
* Severe fatigue
* Mouth or nose sores
* Headaches and dizziness
* Muscle pain
* Hair loss
* Photosensitivity

Blood work doesn't always reflect what's happening during a flare either. Some people experience significant symptoms even when their labs appear normal.

If you're experiencing symptoms that feel like a flare but your doctor isn't acknowledging them, it's important to advocate for yourself. Keep track of all your symptoms, not just the most visible ones, and share this information with your rheumatologist. A MyLupusTeam member shared, "At first, identifying my flare triggers was difficult. I still have some difficulty."

Your experience of your symptoms is valid, even without the "classic" signs.

April 9

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