Just under the wire here, another post before the end of Lupus Awareness Month.
Here's a list of the 11 common lupus SLE symptoms, developed by the American College of Rheumatology (ACR). Doctors for a long time have agreed that if you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.
- Malar rash – appears over the cheeks and nose, often in the shape of a butterfly
- Discoid rash – red, raised, disk-shaped patches
- Photosensitivity – a reaction to sun or light that causes or worsens a skin rash
- Oral ulcers – sores in the mouth
- Arthritis – joint pain and swelling of two or more joints
- Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart (pericarditis). This causes chest pain which worsens with deep breathing.
- Kidney disorder – persistent protein or cellular casts in the urine (you would see bubbles in your urine)
- Neurological disorder – seizures or psychosis
- Blood disorder (found by lab tests)– 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 (found by lab tests)– abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
- Abnormal antinuclear antibody (ANA) (a lab test)
I have experienced #1, 3, 5, 6, 7, 8, 9, 10, 11 out of this list. But remember you only need to experience 4 for it to build a strong case for lupus.
Other symptoms that do not appear among the ACR criteria but are recognized as lupus symptoms:
- fever (over 100° F)
- extreme fatigue
- hair loss
- fingers turning white and/or blue when cold (Raynaud’s phenomenon)
I have experienced all 4 of these.
More symptoms that I experienced that are not on either of these lists but I believe were related to/ caused by the lupus:
- brain fog (confusion)
- unexplained weight loss
- congestive heart failure
- high blood pressure
- digestive problems (stomach just shuts down)
- weakness, especially upper body
- irregularities in menstrual cycle
- neuropathy (nerve pain)
- secondary Sjogrens (lab test/ dry eyes and mouth) (It's not all that unusual to have more than one autoimmune disorder)
Part of the reason I experienced so many symptoms was that my illness went undiagnosed for a couple years, then I was not treated for months. It's really important to get diagnosed as early as possible. Then once I got to see a doctor, I resisted the idea of going on prednisone for 6-7 months. Finally I got sick enough I realized I had no other option. It isn't necessary to go through all I went through. It wasn't even necessary for me to go through all that.
Now that I've overwhelmed you with all the possible things that could go wrong, let me mention one "symptom" of lupus that is not that common anymore (it used to be, before we had drugs to treat it):
I haven't experienced that one yet (came close, but no). And that's because there are treatments available for lupus. Only 50-60 years ago, lupus was a death sentence. Today, for most people, it is not, as long as you monitor the disease and do what you need to do to stay healthy.
There are 2 ways to go once you get diagnosed, and you can do both at once:
- regular medicine (lab tests and medications- regular lab testing is important!)
- alternative medicine (dietary changes and healing modalities)
I'll talk about these in another post.
The important thing is, if you are sick, find out what you've got so you can get a plan of action together.
Think you might have lupus? Here's a quiz from the Lupus Foundation of America