Could It Be Lupus?

Lupus is a chronic autoimmune disease that can affect multiple organs and systems of the body. When you have lupus, your immune system, which normally protects your body from infection, mistakenly attacks your own tissues and organs. This can cause inflammation and damage to various parts of your body. Since it can affect any part of your body, the symptoms are diverse.

Here’s why diagnosing lupus is so tricky:

• It can be confused with other arthritic and painful conditions: Lupus can cause joint pain, swelling and stiffness like rheumatoid arthritis or fibromyalgia.
• It can masquerade as thyroid disease: Fatigue, weight changes and mood swings are common in both lupus and thyroid disorders.
• It can cause kidney disease: Lupus can damage your kidneys, leading to symptoms like swelling and foamy urine like other kidney problems.
• It can copy skin conditions: The butterfly rash across the bridge of the nose and both cheeks is a tell-tale sign of lupus but it could be rosacea instead. Other lupus skin symptoms can resemble eczema or psoriasis. A rash from lupus can be painful or itchy, and sun exposure can bring it on or make it worse.
• It can cause heart issues: Chest pain and shortness of breath associated with the pleurisy (inflammation of the tissues that line your lungs and chest cavity) or pericarditis (inflammation of the sac that contains your heart) caused by lupus can be mistaken for other cardiovascular issues.

Additionally, lupus symptoms come and go, making it even more difficult to pinpoint a diagnosis.

“Because there is no single test for lupus, diagnosis often relies on a process of elimination and meeting multiple criteria to indicate its presence,” says Irene Blanco, MD, MS, a rheumatologist at Northwestern Medicine and coauthor of Living Well With Lupus: A Toolkit for Women. “This process can take time and several appointments with your care team.”

Who Gets Lupus?

Lupus can affect anyone, but it’s nine times more common in women* than men, and two to three times more prevalent in women of color, including women who are Black, Hispanic, Latin American, Asian American, Indigenous American, Alaska Native, Native Hawaiian and other Pacific Islander.

Lupus often appears in people between the ages of 15 and 45. If you have a parent or sibling with lupus, you have a 4.9 times greater chance of also developing the disease.

Common Lupus Symptoms

While lupus can mimic many conditions, some symptoms are more common.

• Fatigue: Feeling exhausted most of the time.
• Joint pain and swelling: Often affecting hands, wrists and knees.
• Skin rashes: The classic butterfly rash on your face, but also other skin issues.
• Fever: Low-grade fever that comes and goes.
• Hair loss: Thinning hair or bald patches.
• Chest pain: When breathing deeply.
• Raynaud’s phenomenon: Fingers and toes turning white or blue in cold temperatures.

Remember that these are just some of the possible symptoms, and not everyone with lupus will experience them. If you notice any of these symptoms, talk with your primary care clinician. You may be referred to a rheumatologist for further examination.

Questions to Ask Your Primary Care Clinician

Compiling a list of questions before your initial medical consultation can help you feel more prepared to discuss your experience and plans for symptom management. Questions will vary depending on your symptoms. Here are a few to consider asking:

• I am experiencing [joint pain/swelling/hair loss/sensitivity to light]. How can I know if what I am experiencing is lupus?
• What other conditions cause similar symptoms?
• Could any of my current medications make my symptoms worse? (Have a list of medications and doses prepared to share with your clinician.)
• Which medical treatment option(s) do you recommend that I try first? Why?
• What, if any, alternative treatments like acupuncture or yoga might be worth trying?
• Are there any helpful strategies or practices I can do at home to assist with managing my symptoms?
• Can you provide me with additional resources to learn more about lupus?

Living With Lupus

There’s no cure for lupus yet, but medical treatments can help manage symptoms and flare-ups. Flare-ups are periods of time when symptoms worsen, such as severe joint pain or a facial rash that appears overnight. In addition to medications your care team may prescribe, there are some things you can do to help manage symptoms — including flare-ups:

• Know your triggers. If you find that certain foods, stress, lack of sleep, an illness such as a cold, supplements or medications cause a flare-up, take note and tell your care team.
• Apply sunscreen daily and wear hats and long sleeves when outdoors. Lupus can make your skin sensitive to sunlight.
• Rest. Get at least eight hours of sleep at night and take naps and breaks as needed during the day. Nearly 80% of people with lupus report fatigue as a common symptom. Rest is a priority.
• Exercise regularly, even if you can only do it a few minutes each day, to strengthen parts of your body that may be affected by lupus — the heart, lungs, bones and joints. Exercise can also boost your mental health, making it easier to cope with a lupus diagnosis and symptoms like inflammation.
• Eat a well-balanced diet. Healthy eating can make a big difference in your lupus symptoms, especially inflammation and fatigue. While there is no “lupus diet,” you may find that certain foods trigger your symptoms while others make you feel better. If you need help making healthy food choices, talk with your care team who can refer you to a registered dietitian. “When people hear ‘Mediterranean diet,’ they can get hung up on thinking it means only eating fish and eggplant,” says Dr. Blanco. “That’s not true. It’s really about eating a variety of unprocessed foods like fruits, vegetables, nuts, seeds, legumes and lean meats.”  
• Stay up to date with your vaccinations. Vaccinations are important for protecting against infectious diseases like HPV, COVID-19 and the flu, but some people with lupus may be more prone to side effects. Talk to your care team about vaccines and what’s right for you.
• Get routine eye exams. It is recommended that people with lupus get an eye exam every year, especially when taking the medication hydroxychloroquine, which can damage the retina.  

If you are planning to use birth control or become pregnant, talk with your care team. The management of reproductive health can be different for people with an autoimmune disorder like lupus.

Educate yourself about the lupus. The more you know, the better equipped you’ll be to manage it.

* Scientists do not always collect information from participants about gender identity. To avoid misrepresenting the results of this research, we use the same terminology as the study authors.