Some diseases are easy to diagnose, while others require more medical sleuthing — and the symptoms are the clues that doctors investigate.
When it comes to the autoimmune disease lupus, there are so many different symptoms, which can affect so many different parts of the body, that it can take months or years for someone to receive the correct diagnosis.
“Even among experts we don’t always see eye to eye on what lupus is,” says Peter Izmirly, MD, director of inpatient rheumatology at Bellevue Hospital Center in New York City and co-director of the New York University Hospital for Joint Diseases Lupus Center.
What’s known is that lupus is a chronic disease in which the body’s immune system mistakenly attacks itself, causing inflammation that can affect multiple organs and tissues. In fact, lupus can affect nearly every part of the body.
Lupus disproportionally affects young women, and is more common in certain ethnic groups like African-Americans and Asians. Scientists still haven’t determined what causes lupus, but they believe that a combination of genes, environmental exposure, and other unknown risk factors contribute to it. People living with lupus may experience periods when the disease is inactive and symptoms are reduced or absent. But they must also contend with lupus flares, in which symptoms suddenly appear or worsen. Read more facts about lupus here.
There is no single diagnostic test for lupus. A thorough medical history, blood tests, and sometimes skin biopsies can help doctors determine if lupus is responsible for your symptoms.
The American College of Rheumatology lists 11 standard criteria of lupus to help doctors make the diagnosis. According to a recent article published in the medical journal BMJ, these criteria allow for 330 different combinations of symptoms and lab tests to make the diagnosis. “There’s a group now working on revising the criteria for lupus, which will hopefully make the diagnosis easier,” says Dr. Izmirly.
Here are some of the wide-ranging symptoms that have been linked with lupus:
1. Butterfly-shaped rash
The characteristic rash across the cheeks and nose (called a malar rash) is one of the most recognized symptoms of lupus, although even this symptom is not clear-cut. “You can sometimes see similar looking rashes in other skin conditions such as dermatomyositis and rosacea,” says Dr. Izmirly.
2. Other skin rashes
A discoid rash — raised, red, and scaly — is also associated with lupus. It can leave scars if not properly treated, and can cause hair loss and bald spots when it occurs on the scalp.
3. Achy joints
Swollen, achy joints very similar to rheumatoid arthritis can be an indication of lupus, but it’s not always easy to tell the two conditions apart. “Even seasoned rheumatologists, examining a young woman with arthritis in her hands, might not find it easy to tell if it’s lupus or rheumatoid arthritis,” says Dr. Izmirly. Here’s more information about the difference between RA and lupus.
According to the Lupus Research Alliance, the majority of people with lupus will sometimes experience unexplained fevers (meaning fevers not linked to another condition) with temperatures over 100 degrees Fahrenheit.
5. Weight loss
Unexplained weight loss — not due to dieting, other illness, or medication side effects — can be a sign of lupus.
6. Kidney disease
Along with rashes and arthritis, kidney problems are among the most common manifestations of lupus. But patients may be unaware of the problem. For instance, there might be blood in the urine, but in microscopic quantities that only a lab test would detect. Or high blood pressure, which isn’t necessarily due to kidney disease.
7. Swollen ankles
Kidney inflammation can cause fluid retention that can make ankles, feet, legs, hands, and sometimes eyelids feel puffy and swollen. And while weight loss can be a symptom of lupus, the weight gain caused by fluid retention can also be a sign of the disease.
8. Chest pain
People with lupus may accumulate fluid around the heart or lungs, which causes pain when breathing deeply.
9. Mouth ulcers
Sores on the roof of the mouth are common with lupus, but unlike the burn you get from eating a hot slice of pizza, these ulcers are painless. Unless you — or your doctor — specifically look for them, you may never know they’re there.
Fatigue is a symptom of many, many medical conditions, and it’s one of the more common symptoms of lupus, too. According to the Lupus Research Alliance, 50 to 90 percent of people with lupus identify fatigue as one of their primary symptoms.
11. Blood cell problems
Anemia caused by damaged red blood cells, low white blood cells, or low platelet count can all be signs of lupus. And since lupus symptoms can develop over months or years, these issues may not immediately be linked to lupus. “A teenager might be diagnosed with low platelets because they’re bruising easily,” says Dr. Izmirly. “But they don’t have any other symptoms. Then months or years later they get rashes or arthritis and are diagnosed with lupus, and you look back at the record and think that the low platelets were probably the earliest signs of lupus.”
12. Sensitivity to sunlight
Sun exposure can cause a lupus rash to develop or flare, and can also cause serious flares of other lupus symptoms.
13. Sensitivity to cold
People with lupus are at risk of developing Raynaud’s, a condition in which the small blood vessels in the hands (and sometimes feet) suddenly constrict when exposed to cold or stress, turning first white, then blue. It’s estimated that approximately one in three people with lupus also have Raynaud’s.
According to the Lupus Foundation of America, people with lupus may be twice as likely to experience migraine-like attacks as the general population. The head pain can be caused by vasculitis, an inflammation of the blood vessels that is also a symptom of lupus.
15. Mental health issues
Psychological disorders like anxiety, depression, and even — less commonly — psychosis can be linked with lupus. “It’s rare but not unheard of for somebody to present with psychosis, but it does happen,” says Dr. Izmirly. “A few years ago there was a patient admitted to the hospital for being psychotic, but somebody did a CAT scan and saw fluid around the heart. They called us, and we did lab tests that came back consistent with lupus.”
16. Neurological issues
When lupus affects the central nervous system, including the brain, it can cause a variety of problems, including confusion or difficulty concentrating, vision problems, seizures, and strokes. Along with the problems caused by lupus attacking the kidneys, the effects from lupus attacking the brain are considered among the most serious symptoms of the disease.