Learning to recognize lupus symptoms in women is so important, as the autoimmune disease mostly impacts people assigned female at birth. In fact, about 9 out of 10 lupus diagnoses are in people ages 15 to 44 who were assigned female at birth, according to the Centers for Disease Control and Prevention (CDC).
What’s more, lupus is more common in Black, Hispanic, Asian, and Native American women than white women, according to the U.S. National Library of Medicine. African American and Hispanic women are also more likely to have a severe form of the disease.
Lupus can be frustratingly difficult to diagnose, given that the signs of lupus can mimic those of many other health conditions. Even the most telltale symptom of lupus, the so-called butterfly rash that can show up across both of your cheeks, doesn’t happen in everyone, according to the Mayo Clinic. Plus, symptoms can pop up and suddenly go away and range from mild to serious. New signs of the disease can also spontaneously show up.
So, if you’re not super familiar with the condition, here’s what you should know about lupus symptoms in women—because it can affect your entire body.
What is lupus? | Lupus symptoms | Lupus flare-ups | Lupus complications
What is lupus, exactly?
The most common form of lupus, medically known as systemic lupus erythematosus (SLE), is an autoimmune disease, a condition in which the body’s immune system mistakenly attacks and destroys healthy cells and tissues. Lupus can damage any part of your body, according to the CDC.
“In a sense, that makes lupus quite unique to all human diseases,” Jill Buyon, M.D., director of the Lupus Center at NYU Langone Medical Center, tells SELF. Because it can affect so many parts of the body, lupus symptoms also vary immensely from person to person.
“The main message is that my lupus may be different from your lupus,” Dr. Buyon says. “We could have 333 people in a room and none of them have the same presentation until the 334th person walks in.”
But what does lupus look like and feel like generally? Some people get hit hard with symptoms right away during a flare-up—a period of time when the symptoms of the disease get worse for a bit and then improve or disappear completely for a while—while others may experience one or two subtle symptoms that worsen over time. Non-specific 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 lupus diagnosis usually involves a physical exam, blood and urine tests, or skin or kidney biopsies, but it is often confirmed due to a “constellation of signs and symptoms,” Dr. Buyon says.
What are the signs and symptoms of lupus?
While generally feeling unwell or like something is “off” with your body is common among those who are eventually diagnosed with lupus, the various signs and symptoms of the disease are plentiful. “There are dominant features,” Dr. Buyon notes—symptoms that are very characteristic of the disease that can help doctors recognize what’s going on.
The signs and symptoms of lupus in women and other people assigned female at birth are thought to be similar to those seen in people assigned male at birth. However, a 2016 systematic review and meta-analysis published in Medicine1 found that hair loss, sensitivity to light, oral ulcers, arthritis, and skin rashes were more prevalent in lupus patients assigned female at birth, whereas kidney issues and inflammation in the lungs and heart were more prevalent in lupus patients assigned male at birth.
With that said, anyone with lupus can be affected by the following symptoms:
Joint pain, swelling, and stiffness, particularly in the morning after waking up, are all classic signs of lupus, Dr. Buyon says. It most commonly presents in the wrists, knuckles, and fingers. This also makes the condition easy to confuse with rheumatoid arthritis, another autoimmune disease.
“The textbook difference between lupus and rheumatoid arthritis (RA) is that lupus can affect joints on one side and not the other, whereas RA usually affects both sides equally,” Dr. Buyon explains. Swelling can also come and go with lupus, according to the Mayo Clinic, and doesn’t get progressively worse and potentially change the appearance of your joints like it does in RA. Lupus also tends to occur in younger patients than RA, Dr. Byon says.
Developing a skin rash when exposed to sunlight is a very characteristic symptom of lupus. A rash can occur on any part of our body, the CDC notes, but one of the most common signs of lupus is a distinct red butterfly-shaped face rash that extends across the bridge of the nose and down both of the cheeks.
About half of all people diagnosed with lupus end up developing this specific rash, also known as a malar rash2, according to the Johns Hopkins Lupus Center. It often occurs after exposure to UV light, but some people with lupus anecdotally note that the face rash can also occur suddenly without a known trigger and may signify the beginning of a flare-up.
About half of people with lupus are sensitive to sunlight and other sources of UV light, which is known as photosensitivity, according to Johns Hopkins. Because of this, in addition to skin rashes, some people with lupus can experience fever, fatigue, or joint pain when they’re exposed to sunlight.
“Ultraviolet light can act as a trigger for lupus flares, which is why it is recommended that patients with lupus wear sunscreen, hats, and long sleeves for protection when in the sun,” Kimberly DeQuattro, M.D., an assistant professor of rheumatology at Penn Medicine, tells SELF.
If you have lupus, a fever higher than 100 degrees Fahrenheit can manifest during a flare-up either due to bodily inflammation caused by the disease itself or an infection, the CDC says. “The reason why you can get a fever during a lupus flare is the same reason why you get a fever when you have an infection,” Lynn Ludmer, M.D., medical director of the department of rheumatology at Baltimore’s Mercy Medical Center, tells SELF. “The white blood cells (your illness fighters in the body) produce inflammatory chemicals that go up to the brain and trigger a fever response.”
Lupus often causes inflammation of the heart or its outer or inner linings. This can result in shortness of breath, sharp chest pain, interrupted blood flow, and ultimately an increased risk for heart disease, the Mayo Clinic notes. Lupus can also affect both the inside of the lungs and the outside lining of the lungs. “Some people say it hurts when they take a deep breath—that’s fluid around the lungs,” Dr. Buyon says. If your chest is bothering you when you breathe, it’s worth mentioning to your doctor. Even if it’s not a symptom of lupus, there could be another underlying health issue at play.
Roughly 70% of people who are diagnosed with lupus deal with some form of hair loss, according to Johns Hopkins. The hair becomes dry and brittle, leading to breakage. “It’s often in the frontal region” and sometimes can cause baldness because of how drastic it is, Dr. Buyon says. Lupus can also cause sores on the scalp, which can impact hair health.
If you present this symptom, you should also have your thyroid evaluated, Dr. Buyon says, as hair loss is also a classic symptom of hypothyroidism. What’s more, overwhelming physical and mental stress—say, due to severe COVID-19, having a baby, or going through depression—can also cause hair loss, so it’s important to discuss your personal circumstances with a doctor you trust to identify what may be prompting the shedding.
Unlike a typical canker sore or abscess, these sores are usually painless, so many patients may not even know they have them, Dr. Buyon notes. They typically present on the roof of the mouth and sometimes even in the nose. These ulcers may be an early sign of a flare and can even be the first sign of lupus before skin rashes or lesions begin to develop, according to a 2017 review of research published in the American Journal of Clinical Dermatology3.
Kidney damage is another hallmark symptom of lupus and typically occurs in more serious manifestations of the disease. The problem is that someone can have deteriorating kidneys without knowing until it becomes serious, Dr. Buyon says. Kidney disease caused by lupus, known as lupus nephritis, can get progressively worse and possibly even lead to kidney failure over time, which would require dialysis (a treatment that filters waste and water from the blood) or a kidney transplant, according to the National Institute of Diabetes and Digestive Kidney Diseases. Kidney problems can cause water retention, resulting in swelling, most commonly in the legs, feet, or ankles. It can also lead to bloody or oddly foamy urine.
Anemia means you don’t have enough red blood cells to carry oxygen through your body. “Anything that causes inflammation in the body can cause anemia,” Dr. Ludmer explains. “With lupus, there is a lot of inflammation.”
It’s generally recommended that people with lupus have blood tests done on a regular basis “to ensure that the different parts of the blood are stable since lupus and some lupus treatments can affect blood count levels,” Dr. DeQuattro says.
“With lupus, you can be well today and sick and hospitalized tomorrow,” Dr. Buyon says. “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 if you start experiencing symptoms often makes matters even worse. Living with fear and anxiety about your health can be par for the course with any chronic condition, but talking to an experienced mental health professional can help. Even if you’re able to manage other physical symptoms, feeling incredibly anxious or depressed about your health is a big enough sign that you should talk to someone to figure out what’s going on.
Constant fatigue is a big symptom of lupus, but unfortunately, it can also signal many different underlying health issues, including other autoimmune diseases. Blood problems like anemia result in low energy levels and overall exhaustion can stem from any of the many things going on inside your body—having issues with your kidneys, lungs, or heart can leave you feeling wiped out.
Lupus can also attack the brain, according to the Mayo Clinic. “You can experience seizures, disorientation, psychosis, and have memory loss,” Dr. Buyon says. While some patients’ brains can be impacted by the disease, others don’t experience these cognitive symptoms at all.
What does a lupus flare-up feel like?
“A lupus flare-up is different from person to person,” Khalid Abulaban, M.D., section chief for rheumatology at Spectrum Health, tells SELF. “Some people flare with skin disease, some flare with predominantly arthritis-like symptoms of joint pain and fatigue, and others flare in the kidneys and may develop renal failure and its associated symptoms.”
If you’ve been diagnosed with lupus, you’ll likely know when a flare-up is starting, Dr. DeQuattro says. “Often people with lupus know when they are having a flare because some of the same symptoms that were present at diagnosis recur in flares,” she says. Flares can be triggered by infections, stress, and not taking lupus treatment medications as prescribed, among other factors.
Can lupus cause complications?
Lupus complications can occur if the condition goes undiagnosed or untreated. According to the Mayo Clinic, this can include complications in the following areas of the body, among others:
- Kidneys
- Brain and central nervous system
- Blood and blood vessels
- Lungs
- Heart
- Bones
Lupus can also increase your risk of various infections since the condition itself and its common treatments can weaken your immune system. Pregnancy complications are also unfortunately possible, as lupus can increase the risk of miscarriage, high blood pressure during pregnancy, and preterm birth.
That doesn’t mean you’re guaranteed to develop these complications, though. “Frequent monitoring of the disease is important as we want to catch symptoms early because earlier treatment will prevent chronic damage from the underlying inflammation,” Dr. Abulaban says.
Finding the right treatment for your personal situation will also help lower your risk of complications. “There are newer treatments to keep lupus controlled,” Dr. DeQuattro says, “and more on the horizon that are promising.”
Sources:
- Medicine, Impact of Sex Disparities on the Clinical Manifestations in Patients with Systemic Lupus Erythematosus
- StatPearls, Malar Rash
- American Journal of Clinical Dermatology, Oral Ulcers in Juvenile-Onset Systemic Lupus Erythematosus
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