Welcome back, my friends, to learning about the shitty chronic disease that lupus is. As a reminder, lupus is a complex, incurable autoimmune disease that randomly attacks tissues and organs. Over time, this disease can decrease one’s overall health and life expectancy.
Check out this post to learn more about how relentless lupus is, the stats associated with it, and the various types of lupus.
In this post, I’m going to cover two common topics that are asked of me:
- What are the symptoms of lupus? (’cause women are afraid they have it also)
- How is lupus diagnosed? (just in case they do have lupus)
Onto the most common symptoms we go.
How exactly do lupus symptoms show up?
Lupus presents itself differently for each person, kinda like your unique fingerprints. It’s rare to find another lupus patient that experiences the exact symptoms as you. This information points to one of the reasons why lupus is so hard to diagnose.
One of the oh-so-fun parts of lupus is that it can affect every part of your body. Yeah, you heard that right. Everything from your beautiful shiny hair down to your little piggy toe can be wrecked by this disease. Well, doesn’t that majorly suck? Let’s go over some of the more common symptoms:
Whole Body: Joint stiffness and/or swelling, arthritis, fatigue, anemia (low iron), fever, nipple hair growth (just making sure you are paying attention), chest pain, weight loss, blood clots, Raynaud’s syndrome (fingers white when cold), edema or swelling, blood in urine, digestive issues, kidney concerns, and cardiac issues
Skin: Hair loss, patches of hair falling out, butterfly-shaped rash on face, sun sensitivity, red rash on the body, skin lesions, scaly rash, bruising, wounds healing slowly
Mouth: Dryness, mouth ulcers, tongue cuts, increased cavities due to dryness
Brain: Anxiety, seizures, clinical depression, brain fog, headaches, memory issues, migraines, and even more.
Phew, that is one long list of symptoms and, if you can believe it, there are still many other symptoms missing here.
Some women with lupus experience mild symptoms that can be considered uncomfortable and inconvenient, yet manageable. Like a rash showing up on your face or having mouth ulcers. Others can find themselves in the hospital consistently (and it’s not for the tasty hospital food served) suffering from multiple organ issues. Know that you may go from lukewarm symptoms to severe and life-threatening concerns all within a year.
Although there is a whole slew of possible symptoms experienced, the most common ones reported include:
A familiar symptom for women with lupus is extreme tiredness (aka fatigue). Notice the emphasis used here: extreme. This doesn’t mean you’re just a wee bit tired- like I’ll just pop by Starbucks for a unicorn rainbow Frappuccino to boost me up. Rather, you are bone tired and find it exhausting to just think about getting dressed and eating breakfast..
Pain can show up at specific locations, like the knees or hands, or as a full-body ache that feels similar to the flu. Stiffness and/or swelling are the markers of joint pain and you typically feel worse in the morning and evening. Pain can range from feeling irritating to all-consuming.
A butterfly-shaped rash on the face wrapping around the cheeks and up to the nose is associated with lupus. This is called a discoid rash. For others, like me, a variety of rashes can be seen across the face, neck, and body with or without skin lesions. Exposure to the sun will intensify the rash and can increase lupus symptoms.
Women with lupus may run low-grade fevers (100 or below) consistently. Others have a fluctuating fever that comes and goes. This is certainly more likely to occur during a flare.
Due to inflammation, lupus can cause the hair on your scalp to thin out, and some women have patches of hair loss. It’s also possible to lose hair in your eyebrows, eyelashes, and across your body. Hot damn, to lose a bunch of hair seriously sucks! It’s normal to shed 50 to 100 strands of hair each day. It’s scary and abnormal to have patches of hair that fall out and to lose handfuls of hair.
Inflammation in the heart and or lungs is what brings on the chest pain experienced. This pain is called pleuritis and feels like a sharp pain with a deep inhale, a cough, a sneeze, or a laugh. It can be long-lasting or come and go for a brief period. Shortness of breath can be experienced as well.
Edema is when the body swells up with fluids. It is typically felt in the feet, ankles, legs, and eyelids, but can be in the entire body. This swelling can be a sign of kidney concern.
How is lupus diagnosed?
Most women are diagnosed with lupus between the ages of 15 and 45. I say women because 90% of all people with lupus are females. Lucky us, not!
Let’s talk about how a physician determines if you have lupus. A diagnosis is not as simple as you believe because you can’t run to your doctor and say, “test me for lupus”. There is not a specific blood test that is definitive for “yep” or “nope”. Rather, the American College of Rheumatology has set criteria that are useful to review. To receive a diagnosis of the most common and most serious type of lupus called SLE (systemic lupus erythematosus), you’ll need to meet at least four of the following eleven symptoms:
- A butterfly rash on cheeks
- Rash on face, arms, neck, or torso
- Sensitivity to the sun
- Recurring mouth or nose ulcers
- Stiffness, swelling, and pain in the joints
- Inflammation of the lungs or around the heart
- Abnormalities in urine like protein in the urine
- Nervous system problems, such as seizures
- Problems with blood, such as anemia or reduced platelets
- Lab tests showing an increased autoimmune activity
- A positive result of an Antinuclear Antibodies (ANA) blood test.
(Oh boy, I have between eight to ten symptoms. What do I win? Ugh, only lupus.)
On average, it takes five to seven years to be diagnosed with lupus because 1) it’s hard to diagnose and 2) mimics so many other diseases. For me, it took about twenty years from the first symptoms to diagnosis, with another autoimmune diagnosis thrown in between.
Overall, this is how the process goes to getting diagnosed with lupus:
- You are referred to a specialist in rheumatology by your primary care provider (PCP), typically after your urine and blood tests show abnormalities. A rheumatologist is a physician who receives extensive training in the detection and treatment of diseases that affect your joints, muscles, tendons, and ligaments. Note that there is typically a longer waiting period to see a rheumatologist in our country with three to six months being the norm.
- During your first visit, the rheumatologist will ask many questions to learn about you and your symptoms while also reviewing your test results. He/she will rule out other conditions that could be causing your symptoms because lupus is the great mimicker of other diseases. The next steps will be discussed, which will typically involve more blood and urine tests and possibly x-rays or scans, and you’ll be on your merry way.
- You will most likely return to your rheumatologist after waiting a crushing 2-6 weeks to discuss the test results. From here, a plan will be created to manage your symptoms with the possible inclusion of medication to control this disease, pain, and inflammation.
In the next post, I’ll discuss why lupus is often misdiagnosed and exactly who or what you can blame for having lupus.