Diagnosing lupus can be complicated. It can take several years and many visits to multiple doctors before a diagnosis is made. One reason may be that lupus symptoms in women can come on during periods of hormonal changes such as menarche or first year of her period, pregnancy, childbirth, menopause and even routinely with different stages of the monthly cycle.
Many wonder why autoimmune diseases, like lupus, are so hard to diagnose. It takes, on average, 4.5 years to diagnose an autoimmune disease. This is due to the fact that autoimmune diseases rarely present as what they actually are and can manifest with a variety of flaring symptoms.
With an autoimmune disease, the immune system mistakes the body’s own cells as foreign, and launches attacks on healthy tissues. These attacks can manifest almost anywhere in our bodies as pain, inflammation, a rash or other kinds of damage, but the affected system or organ may have little to do with the condition itself.
In addition, there is not yet a definitive blood test or biomarker for autoimmune illness, and the symptoms are often “invisible” to those outside of the patient’s own body. Often, patients experience very real and debilitating symptoms, but their tests results come back negative or inconclusive. When that happens, their illness is deemed either abnormal or nonexistent.
For example, a patient may appear at an emergency room with acute chest pain, but if tests come back normal, the patient is likely to receive some kind of symptom-suppressing drug and be sent home. That patient leaves the ER with the immediate problem solved, but without any understanding of the underlying problem or what caused the pain in the first place. The symptoms themselves, although real, can be elusive, coming and going just as quickly, making it tricky for the patient to explain and the physician to observe.
With lupus, diagnosis is made by looking at a combination of factors like family history, lab work and the frequency and intensity of one's symptoms. Oftentimes women with lupus will have episodes of symptoms, called flares, where their signs or lupus symptoms will appear or worsen, before improving or even going away for a while. This can also compound the difficulty with finding a diagnosis.
Common Lupus Symptoms in Women
Early symptoms may include fatigue, joint and muscle pain, fever, or weight change. The most common lupus symptoms in women are:
- Joint pain, stiffness and swelling
- Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose or rashes elsewhere on the body
- Skin lesions that appear or worsen with sun exposure
- Shortness of breath
- Chest pain
- Dry eyes
- Headaches, confusion and memory loss
Many women with lupus may also have problems that affect their skin and hair, such as:
- Hair loss
- Sores in the mouth or nose
- Fingers and toes turning white or blue and feeling numb when a person is cold or stressed (Raynaud’s Disease)
Additionally, inflammation caused by lupus can affect many areas of a woman’s body:
- Kidneys. Lupus can cause serious kidney damage, and kidney failure is one of the leading causes of death among people with lupus.
- Brain and central nervous system. If your brain is affected by lupus, you may experience headaches, dizziness, behavior changes, vision problems, and even strokes or seizures. Many people with lupus experience memory problems and may have difficulty expressing their thoughts.
- Blood and blood vessels. Lupus may lead to blood problems, including a reduced number of healthy red blood cells (anemia) and an increased risk of bleeding or blood clotting. It can also cause inflammation of the blood vessels.
- Lungs. Having lupus increases your chances of developing an inflammation of the chest cavity lining, which can make breathing painful.
- Heart. Lupus can cause inflammation of your heart muscle, your arteries or heart membrane.
While anyone can have lupus it is much more common for women, with about 90% of diagnosed cases being women of reproductive age. Lupus is also more common in certain ethnicities; African-American, Hispanic, Asian and Native American women are all more likely to have lupus than Caucasian women.
If you are a woman and struggling to be heard by your medical team, or would simply benefit from a personalized approach, Mymee can help. We understand your autoimmunity is unique, so you can work to create a personalized plan to manage your symptoms with a certified Mymee health coach.