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Waiting to be diagnosed with Lupus?

Updated: Apr 18

Lupus, also known as systemic lupus erythematosus (SLE), is a chronic autoimmune disease that can affect various parts of the body, including the skin, joints, kidneys, and other organs. The disease is caused by an overactive immune system that attacks healthy tissues and organs, leading to inflammation, pain, and damage.

I have Lupus myself and have seen SO many clients - we all present slightly differently with our own personal version of Lupus.

Lupus symptoms can be vague and varied, and they may come and go over time. Some people with lupus may have mild symptoms, while others may experience severe symptoms that affect their daily life. Here are some common symptoms of lupus:

  1. Fatigue: Feeling tired or exhausted even after rest or sleep is a common symptom of lupus. This fatigue is usually not relieved by rest.

  2. Joint pain and stiffness: Lupus can cause inflammation in the joints, leading to pain, stiffness, and swelling. This can affect any joint in the body, but it is most commonly felt in the hands, wrists, and knees.

  3. Skin rash: A butterfly-shaped rash on the face, across the cheeks and nose, is a classic sign of lupus. The rash may also appear on other parts of the body, such as the chest, arms, and legs.

  4. Photosensitivity: People with lupus m

ay be sensitive to sunlight and other sources of UV radiation, leading to skin rash, hives, or other symptoms.

  1. Fever: Low-grade fever is a common symptom of lupus, especially during flare-ups.

  2. Hair loss: Lupus can cause hair loss, which may be temporary or permanent.

  3. Raynaud's phenomenon: In some cases, lupus can cause Raynaud's phenomenon, a condition where the blood vessels in the fingers and toes narrow in response to cold or stress, causing the fingers and toes to turn white, blue, or red.

If you experience any of these symptoms, it's i

mportant to talk to your doctor. While these symptoms may be caused by other conditions, they could also be signs of lupus.

In some cases, lupus can become more serious and even life-threatening. Here are some warning signs that your lupus may be getting worse:

  1. Severe joint pain and swelling: If your joints are becoming increasingly painful and swollen, it could be a sign that your lupus is getting worse.

  2. Kidney problems: Lupus can cause kidney damage, which can lead to swelling in the legs, ankles, and feet, as well as changes in urination patterns.

  3. Chest pain: Lupus can cause inflammation in the lining of the heart and lungs, leading to chest pain, shortness of breath, and other symptoms.

  4. Blood disorders: Lupus can cause anemia, low platelet count, and other blood disorders that can affect your overall health.

  1. Neurological symptoms: Lupus can cause a range of neurological symptoms, such as headaches, seizures, and changes in mental status.

If you experience any of these symptoms, it's important to seek medical attention right away. These symptoms could be signs of a lupus flare-up or other serious complications.

Getting a lupus diagnosis can be challenging, as the symptoms can be vague and varied, and there is no single test to diagnose the disease. Doctors often rely on a combination of medical history, physical examination, and laboratory tests to make a diagnosis. The American College of Rheumatology has developed a set of criteria for diagnosing lupus, which includes:

1. Rashes:

  • Butterfly-shaped rash over the cheeks - referred to as malar rash

  • Red rash with raised round or oval patches - known as discoid rash

  • Rash on skin exposed to the sun

2. Mouth sores: sores in the mouth or nose lasting from a few days to more than a month

3. Arthritis: tenderness and swelling lasting for a few weeks in two or more joints

4. Lung or heart inflammation: swelling of the tissue lining the lungs (referred to as pleurisy or pleuritis) or the heart (pericarditis), which can cause chest pain when breathing deeply

5. Kidney problems: blood or protein in the urine, or tests that suggest poor kidney function

6. Neurologic problem: seizures, strokes or psychosis (a mental health problem)

7. Abnormal blood tests such as:

  • Low blood cell counts: anemia, low white blood cells, or low platelets

  • Positive antinuclear antibodies (ANA) result: antibodies that can cause the body to begin attacking itself that are present in nearly all lupus patients

  • Certain abnormal antibodies: anti-double-strand DNA (called anti-dsDNA), anti-Smith (referred to as anti-Sm), or antiphospholipid antibodies

And unfortunately you may also need a bit of patience, it can take on average 6 years to be correctly diagnosed with Lupus.

Here are some tips to be prepared for your doctor's appointment ...

  1. Track your symptoms objectively (7/10 joint pain on arms/wrists/fingers on February 1-10th and 22-30th)

  2. Photograph your rashes, including ones that appear after sun exposure

  3. Be persistent - if you feel that your symptoms are dismissed by a doctor, it may be time to seek a second opinion

If you're ready for a clear plan to change your diet and lifestyle to reduce your symptoms, contact me today!

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