Like many autoimmune diseases, lupus affects more women than men. In fact, 90 percent of people diagnosed with the life-long condition are young women between the ages of 15 and 34, according to the S.L.E. Lupus Foundation. (S.L.E. stands for systemic lupus erythematosus, the full name of the disease.)
As with its chronic cousins Hashimoto’s thyroiditis, multiple sclerosis, and more, there’s no known cause. Experts suggest a mixture of genetics and environment, but it’s still a mystery as to why some develop lupus. It’s also very hard to diagnose because the effects are broad-ranging and often look like any number of other conditions.
“Lupus can affect almost any part of the body. In a sense, that makes it quite unique to all human diseases,” Jill Buyon, M.D., director of the Lupus Center at NYU Langone Medical Center, tells SELF. Its symptoms also vary immensely from person to person. “The main message is that my lupus may be different from your lupus,” Buyon says. “We could have 333 people in a room and none of them have the same presentation until the 334th person walks in,” she explains. Some people get hit hard with symptoms right away, while others may experience one or two subtly that worsen over time. Unspecific symptoms, such as fever and lymph node swelling, can occur because of lupus, but fail to signal the disease to doctors in the absence of other telltale signs. A diagnosis usually takes a “constellation of signs and symptoms,” says Buyon.
While generally feeling unwell or like something is “off” is common among those who are ultimately diagnosed with lupus, the specific signs and symptoms of the disease are plentiful. “There are dominant features,” Buyon notes—symptoms that are very characteristic of the disease and can help doctors recognize what’s going on. Below are the most common signs of lupus. If you think you may have it, see your doctor to talk about your concerns ASAP.
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1. Joint swelling and pain
“Joint pains and joint swelling and stiffness in the morning,” are all classic signs of lupus, Buyon says. It most commonly presents in the wrists, knuckles, and fingers. This also makes it easy to confused with rheumatoid arthritis. “The textbook difference between lupus and rheumatoid arthritis is that lupus can affect joints on one side and not the other, whereas RA usually affects both sides equally,” Buyon explains. Swelling can also come and go with lupus and doesn’t get progressively worse and disfiguring like it does in RA. “Lupus also tends to occur in younger patients.”
2. Face rash
Developing a skin rash when exposed to sunlight is a very characteristic symptom of lupus. It’s called a butterfly rash and usually extends from the bridge of the nose, down the cheekbone, to the jawbone.
3. Water retention and bloody urine
Kidney problems are another hallmark symptom and typically occur in more serious manifestations of the disease. The problem is, that someone can have deteriorating kidneys without knowing until it gets bad, Buyon says. Kidney problems can cause water retention, resulting a swollen or puffy feeling, and causing water-weight gain. It can also lead to bloody urine.
4. Chest pain
Lupus often causes inflammation of the heart or its outer or inner linings. This results in shortness of breath, sharp chest pain, interrupted blood flow, and ultimately an increased risk for heart disease. Lupus can also affect both the inside of the lungs and the outside lining. “Some people say it hurts when they take a deep breath—that’s fluid around the lungs.” If your chest is bothering you when you breathe, that’s a red flag.
It’s a big symptom of lupus, but unfortunately, it can also represent a lot of different diseases. Lupus can cause blood problems like anemia, which result in low energy levels, and this overall feeling of exhaustion can come from any of the many things going on inside your body—having unhealthy kidneys or lungs or a heart can leave you exhausted.
6. Hair loss
“It’s often in the frontal region, and sometimes can cause embarrassing baldness” because of how drastic it is, Buyon says. It can also cause sores in the scalp. If you present with this symptom, you should also have your thyroid evaluated, Buyon says. Hair loss is a classic symptom of hypothyroidism.
7. Mouth sores
Unlike a typical canker sore or abscess, these sores are usually painless, so many patients may not even know they have them, Buyon notes. They typically present on the roof of the mouth, and sometimes in the nose.
8. Seizures and memory loss
Lupus can also attack the brain. “It can affect the brain, no question, you can have seizures, disorientation, become psychotic, and experience memory loss,” Buyon says. While a lot of patients’ brains are impacted by the disease, others don’t experience these symptoms at all.
9. Mental health problems
“I also think anxiety plays a big role because unlike any other sickness (besides IBD), you can be well today and sick and hospitalized tomorrow. That’s a scary thought. The unpredictable nature of one’s health can be very anxiety provoking.” Feeling unstable and also not knowing what’s wrong makes matters even worse. Living with fear and anxiety about your health is par for the course with lupus, and even without other symptoms, is a sign enough that you need to talk to someone to figure out what’s going on.