Often called the “copycat” disease, because symptoms mimic so many other conditions, diagnosing lupus can often be anything but cut and dried. Symptoms can be vague and intermittent, which can often make a person feel as if they are suffering frequent bouts of the flu, or some other less-serious condition. Many of us when we first became ill, just powered through the fatigue and pain in an effort to keep it all together. It’s often only after sustained changes in pain, energy level and physical appearance that lupus is considered and the patient is correctly diagnosed.
By some accounts, the time between onset and diagnosis can range from a few months- to several years! By that time, both the patient and the doctor can tell that something is seriously wrong, and the patient will often be exhibiting many of the symptoms on the official list of diagnostic criteria (see below). A major part of lupus awareness initiatives is to educate the public on the symptoms in the hopes of diagnosing lupus earlier and initiating treatment- hopefully reducing damage to the body.
In addition to that, my specific awareness goals focus on prevention and holistic system management and reversal. Many people feel as if lupus is not preventable, but I disagree. Every person has a genetic predisposition for some type of illness. However, genetic research is increasingly showing that the blueprint we are born with only accounts for 5% of the illness we are beset with. Instead of being slaves to our genes, it has been shown that ENVIRONMENTAL factors actually claim the most responsibility. Simply put, factors such as diet, stress, toxins, climate, etc. have a profound impact on our health and the ability to switch on disease promoting genes. I’ll share more about this in other sections of the site, but for now- back to diagnosing lupus.
What are the diagnostic criteria for lupus?
To help in diagnosing lupus, the American College of Rheumatology have complied a list of 11 of the most common symptoms of lupus. These are markers that have been compiled based on examining thousands of cases and identifying with at least 4 is an indicator of possible lupus. However, it is important to know that some people eventually diagnosed with lupus did not initially meet this criteria. If you feel strongly that you are dealing with a chronic autoimmune condition- lupus or otherwise, don’t give up until you get answers. I know it can often be hard in the face of medical skepticism, but you know your body better than anyone. For some, the path to a diagnosis will be easier as they clearly exhibit four or more of the symptoms below:
- Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
- Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
- Oral ulcers – sores appearing in the mouth
- Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
- Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
- Kidney disorder – persistent protein or cellular casts in the urine
- Neurological disorder – seizures or psychosis
- Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
- Immunologic disorder –anti-DNA or anti-Sm or positive antiphospholipid antibodies
- Abnormal antinuclear antibody (ANA)
- Discoid rash – a rash that appears as red, raised, disk-shaped patches
In addition to the list above, many patients experience other symptoms that should be mentioned to your health care team to help in diagnosing lupus. Nothing is too small or strange to mention and it may provide the missing clue to your condition. You can read about some of the less talked about first symptoms of lupus here.