12 Early Signs of Lupus in Women

Fatigue, joint pain, rashes, brain fog. Unexplained health issues may be raising your suspicions that you may have an autoimmune condition. One such disease that can cause these vague symptoms is lupus. If you’ve been seeing multiple providers without clear answers, we’ve put together a list of some of the more common early symptoms of lupus, including insight on how they uniquely present in women. Here’s what every female needs to know.

Selena Gomez is perhaps the most recognizable person who’s been open about living with lupus. Through social media, she’s been candid about the kidney transplant she received due to damage associated with the autoimmune disease.

Still, despite the attention, lupus remains difficult to diagnose. That’s because symptoms like fatigue, joint pain, and brain fog are non-specific, meaning they can be seen in a variety of other diseases, and they can also arise due to lifestyle factors like stress. What’s more, there’s also not a clear way to diagnose lupus, and some doctors can miss the signs completely.

Early detection is vital, as prompt treatment can delay or stop the progression of the disease before it damages internal organs. If you’ve been experiencing the frustration of vague, unexplainable symptoms that don’t go away and have considered lupus as a possible cause, you'll want more information. Ahead, you’ll learn more about how lupus works, 12 early signs to watch for, and how to seek the help and care that you need.

Understanding lupus

What is lupus disease? Lupus is an autoimmune disease affecting the connective tissues. Also called systemic lupus erythematosus (SLE), it is a condition where the body’s immune system attacks itself, causing damage.

Most commonly, lupus is seen in females of reproductive age, particularly those who are Black, Asian, and Hispanic. In fact, women have a 10-fold higher risk of developing lupus compared to men. That may be due to how estrogen affects immune cells, though researchers think there may be something more going on than hormonal differences between males and females.

Common early signs of lupus in women

There is not one set of lupus symptoms in women.

Autoimmune disease in general features varying symptoms and severity that fluctuate over time. “Every patient with lupus looks different. Lupus can affect pretty much any part of the body depending on what body tissues the immune system decides to attack and cause inflammation,” says Neha S. Shah, M.D., an integrative rheumatologist at Stanford University Hospital & Clinics.

There are common symptoms that people with lupus  experience. Many of these are called “constitutional symptoms,” as they affect how the body feels overall, dragging down your sense of well-being. Most everyone with lupus will have one or more of the below:

Constitutional symptoms

1. Fatigue, which can be so severe, it can be difficult to function during the day. The bone-crushing tiredness you feel also doesn’t get better with rest.
2. Fever, specifically one that does not have a known cause (like infection).
3. Muscle aches, discomfort or generalized pain can make it tough to do daily activities and sleep at night.
4. Weight loss, which is unintentional due to symptoms like decreased appetite. Weight loss may occur before you’re diagnosed with lupus.
5. Joint pain and stiffness are often one of the earliest signs of lupus, this arthritis tends to move from one joint to another, affect multiple joints, and impact joints symmetrically.

Skin and hair-related symptoms

Up to 85% of people with lupus will see skin symptoms at some point. For one out of four, skin symptoms are what send people to the doctor for help. Here’s what to look for:

1. Malar rash: One of the most well-known signs of lupus is the butterfly-shaped rash that spreads across the cheeks and nose (sparing the nasolabial folds). Called the malar rash, it is red, raised or flat, and itchy, and can quickly pop up and stay for several weeks. Butterfly rashes can occur in other skin conditions, such as rosacea, according to the Journal of Rheumatology, so it’s important to have this properly diagnosed with a dermatology specialist.
2. Photosensitivity: Sensitivity to sunlight means that exposure to UV light triggers a skin rash in sun-exposed areas of skin. Photosensitivity occurs in other conditions, too, such as polymorphous light eruption, photoallergic contact dermatitis, and sun allergy.
3. Alopecia: Alopecia means hair loss. Lupus can cause rashes and sores on the scalp as well as a surge of proinflammatory proteins that disrupt the hair growth cycle, leading to hair loss or thinning that affects as many as 85% of those with lupus. Lupus hair loss doesn’t follow a set pattern, according to research in the Journal of the American Academy of Dermatology. Some people have mild hair thinning all over their scalp, for others thinning is severe. Hair may also fall out in patches or generally be fragile or break easily along the hairline. In addition, loss can be temporary or permanent if the hair follicles themselves have been damaged.
4. Skin lesions or discoloration: Lupus may affect the skin in other ways, including causing discoid lesions (round sores), livedo reticularis (violet or reddish lacy pattern or stain under the skin), “canker sore” ulcers in the mouth, nose, and eyes, hives, and purpura (leaking blood vessels that cause red or purple discoloration).

Other early physical symptoms

Any tissue or organ can be impacted by lupus, which adds to the complexity of the autoimmune disease. Look out for these other potential symptoms:

1. Raynaud’s phenomenon. This is where blood vessels in fingers and toes constrict, leading to loss of color, and blue, or red discoloration.
2. Recurring miscarriages. Pregnancy loss may be a sign of lupus that affects women specifically.
3. Menstrual symptoms: Lupus overwhelmingly affects women of reproductive age. And females with lupus have reported more pain, fatigue, and more lupus symptoms right before and during their period. (Of course, it’s worth noting that both lupus and PMS can share symptoms like pain and fatigue.)

Menstrual and hormonal clues

In addition to worsening symptoms around menstruation, there are other hormonal impacts to keep in mind as well. Hormonal contraceptives that contain estrogen as well as menopausal hormone therapy may trigger flares. In some cases, estrogen therapies should be avoided for lupus patients, though this depends on individual health risks. “This is one reason why it’s important to have good communication between all providers and patients so we can address health holistically,” Dr. Shah says.

If you’re in the midst of family planning as a female with lupus, you’ll want to pull in your provider for a discussion, says Dr. Shah. Together, you can talk about what medications are pregnancy-friendly (or not) or what forms of reliable birth control are safe to be on. “With well-controlled lupus, pregnancy can be supported. Appropriate treatment leads to improved outcomes for mom and baby,” she says.

Lupus and internal organ involvement (early onset)

Lupus can affect your heart and blood vessels, kidneys, lungs, and nervous system and brain. This isn’t a guarantee for every person with lupus, says Dr. Shah. “Not everyone who has mild symptoms will go on to develop organ involvement. Typically, how someone presents in the first couple of years usually determines the course of lupus, i.e. if it affects the organs or not,” she explains. Early diagnosis and intervention not only help you manage symptoms to feel better in your day-to-day life, but prompt treatment reduces inflammation to prevent damage to these organs.

When to seek medical attention

Early symptoms of lupus in women can be non-specific (hair falling out, fatigue, muscle pain, etc.), which is why it’s often misdiagnosed or even brushed off by a medical provider as “just” stress or anxiety. What can help is tracking your symptoms over time, which helps you pinpoint patterns in symptoms and their triggers, as well as gives you and your doctor some objective data to work with. If you are having mysterious and unexplained symptoms that are not going away and are encroaching on your productivity and enjoyment of life, see a medical provider. Seeking medical care is the first step toward feeling better again.

Still, mild, vague symptoms and lab abnormalities may not be caught right away or can be blamed on other things. That certainly needs to change. “As rheumatologists, we are trying to educate primary care physicians, who are often the first-line care for patients, in recognizing the early signs so that they can do an ANA test and make a referral to a rheumatologist for diagnosis,” says Dr. Shah. (More about the ANA, below.)

As a patient, it’s not your responsibility to come up with a diagnosis on your own, but you can speak up and request a physical exam and lab work. Seeking care from providers who consider autoimmune conditions early on or those who take your concerns seriously and investigate fully can lead to a faster diagnosis and get you on the way to a treatment plan.

Lupus diagnosis and testing

Lupus can be difficult to diagnose early due to the overlap of vague symptoms seen in many other autoimmune conditions, such as rheumatoid arthritis. What’s more, early lupus symptoms often get dismissed or misdiagnosed.

A blood test can be an early screening test to rule lupus out or in. Providers will order an antinuclear antibody (ANA) test, which is a protein that your immune system makes when it’s attacking your own body. However, there are big caveats to this test. “A positive ANA does not equate to lupus,” says Dr. Shah. ANA can be positive in other autoimmune conditions, such as Sjögren’s syndrome, scleroderma, and Hashimoto’s thyroiditis, and it may also be positive and mean nothing, she explains.

This can be anxiety-inducing if you go down the path of Dr. Google at this point. (And who could blame you?)

That’s where additional evaluation comes in, including your history and physical exam (looking for all of the signs and symptoms of lupus mentioned here), as well as other lab tests like:

• Complete blood count
• Basic metabolic panel
• Liver function tests
• Erythrocyte sedimentation rate (ESR) and/or c-reactive protein (CRP) levels (to measure active inflammation)
• Thyroid testing

In some instances, lupus shows itself obviously and abruptly, and people have several symptoms of lupus all at once, says Dr. Shah. These patients may get a quick diagnosis. In other times, the picture is incomplete and you may be in your rheumatologist’s office without a definite diagnosis. It’s here that you may hear “undifferentiated connective tissue disease,” a term that suggests that you have an autoimmune condition but doctors aren’t sure if it’s lupus, rheumatoid arthritis, scleroderma, or another. Overtime, as symptoms of lupus manifest, the diagnosis will become more clear.

Once lupus is diagnosed, a functional medicine provider may recommend additional testing, such as gut health testing, micronutrient tests, and inflammatory markers, among others to get a more complete picture of your health and how to help you.

Living with early-stage lupus

Like the disease itself, the course of lupus differs for everyone. Some people will have mild disease that can be managed with lifestyle changes only, while others who have more aggressive disease will need medications to come on board to clear inflammation quickly to reduce the risk of organ damage, says Dr. Shah.

“Lifestyle has a huge impact in decreasing damage accrual, as the longer lupus goes uncontrolled, the more irreversible damage may occur, including for the heart, lungs, kidneys, and brain,” says Dr. Shah.

In one study in the journal Arthritis Care & Research, authors divided lupus symptoms into two categories. Type 1 included more of the clear-cut symptoms, such as joint pain and stiffness and nephritis (inflammation of kidney tissues) that may come and go with flares. Type 2 included the more pervasive symptoms like fatigue, body pain, depression, anxiety, and sleep disturbances that tend to be more chronic. “Many of the things that people complain about the most aren't things well-solved with conventional medicine,” says Tanya Freirich, M.S., RD, a dietitian specializing in lupus management who herself has been diagnosed with lupus. The fact that symptoms like fatigue, pain, and brain fog frequently go unaddressed due to lack of guidelines for treating these is a prime reason why research has found that lupus patients struggle with low quality of life, according to a study in RMD Open.

This is where a functional medicine approach can be valuable in drawing up an individualized plan. “If you look at a room of 1,000 people with lupus, their symptoms, histories, and lab work will all look different. It’s amazing how in one disease there can be so much variety,” she says.

Freirich recommends several lifestyle changes:

• Shift toward a more whole food, unprocessed diet focused on anti-inflammatory foods
• Learn what triggers your symptoms
• Eliminate the triggers that are making you feel bad
• Address stress management
• Move your body in ways that feel good for you
• Focus on sleep

In addition, Dr. Shah also recommends wearing sunscreen, eating more omega-3 fatty acids found in foods like fatty fish, chia, and flax, consuming adequate fiber (to clear out toxins), as well as avoiding environmental toxins like smoking, pesticides and herbicides, and air pollution (when possible). All of these things can play a role in disease management and help you recapture a sense of health and wellness.

Frequently asked questions (FAQs)

What are the first warning signs of lupus?

Some of the first warning signs of lupus in women include fatigue that doesn’t go away with rest, unexplained fever, muscle aches, joint pain and stiffness, and unintentional weight loss.

What shouldn't you do if you have lupus?

You can live a very full life if you have lupus. With the right care and treatment, the disease does not have to hold you back from doing the things you enjoy. However, you should not smoke, allow stress to build-up, skip wearing sunscreen, or plan a pregnancy without first talking to your doctor if you have lupus.

What is the average age of lupus diagnosis?

Lupus usually develops between age 15 and 44.

How to stop lupus from progressing?

A healthy lifestyle, coupled with appropriate medical treatment with medication, if needed, can help stop the progression of lupus. That means avoiding smoking, consuming an anti-inflammatory diet, maintaining physical activity, and avoiding toxins and pollutants when possible.

Is lupus a curable disease?

No. Lupus is a lifelong, chronic disease. As an autoimmune condition, lupus goes into flares (where disease activity picks up) and remission (when the disease is inactive and symptoms go away or are mild). Some people can go into remission and stay there. One study found that roughly 15% of lupus patients stayed in complete remission for at least three years and about 4% were in remission for at least 10 years.

What vitamins should you avoid if you have lupus?

Avoid taking vitamin E, vitamin A, and beta-carotene, all of which can be harmful to heart health (a risk that increases when you have lupus). (It is okay, however, to get these nutrients through food.) There are also certain supplements experts recommend avoiding if you have lupus, including garlic and echinacea, as these may increase immune system activity, possibly triggering a flare.

How to avoid getting lupus?

Developing an autoimmune condition like lupus is based on genetic factors as well as environmental ones, and these diseases cannot be readily prevented. However, if you have a high risk of lupus due to a strong family history or personal history of another autoimmune connective tissue disease, you can consider taking a vitamin D and omega-3 supplement, eating an anti-inflammatory diet, and avoiding environmental toxins by abstaining from smoking, choosing organic foods if available, using air filters or wearing a mask on high pollution days, advises Dr. Shah.

Conclusion

Lupus is an autoimmune disease where your body attacks and inflames the connective tissues. The condition can affect your skin and hair, cause crushing fatigue and joint discomfort, as well as damage internal organs like the kidneys. If you are experiencing chronic or mysterious health challenges, particularly vague symptoms like fatigue that you don’t have answers for, you deserve real insight into your body.

A clinician that is well-versed in autoimmunity, such as a functional medicine doctor at Parsley Health, can help you get the answers and support you need by looking at the root causes behind a diagnosis.

Key takeaways

• Lupus is an autoimmune condition that predominantly affects females in reproductive age. The immune system attacks its own tissues, causing inflammation throughout the body.
• Early symptoms of lupus are vague and nonspecific, including fatigue, unexplained fever, unintentional weight loss, and muscle aches.
• If you suspect that your symptoms are due to a budding autoimmune disease, talk to a provider who is knowledgeable in autoimmunity. An ANA blood test is one of the first steps toward getting a diagnosis.