Lupus Symptoms

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.

1. Malar rash – appears over the cheeks and nose, often in the shape of a butterfly
2. Discoid rash – red, raised, disk-shaped patches
3. Photosensitivity – a reaction to sun or light that causes or worsens a skin rash
4. Oral ulcers – sores in the mouth
5. Arthritis – joint pain and swelling of two or more joints
6. 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.
7. Kidney disorder – persistent protein or cellular casts in the urine (you would see bubbles in your urine)
8. Neurological disorder – seizures or psychosis
9. 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)
10. Immunologic disorder (found by lab tests)– abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
11. 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:

1. fever (over 100° F)
2. extreme fatigue
3. hair loss
4. 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:

1. brain fog (confusion)
2. unexplained weight loss
3. congestive heart failure
4. high blood pressure
5. digestive problems (stomach just shuts down)
6. weakness, especially upper body
7. irregularities in menstrual cycle
8. neuropathy (nerve pain)
9. anxiety
10. depression
11. secondary Sjogrens (lab test/ dry eyes and mouth) (It's not all that unusual to have more than one autoimmune disorder)
12. fibromyalgia

Obviously, this is my list so I've experienced all 8 of these as well. 

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):
Death.

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
http://www.lupus.org/newsite/pages/lupusChecklist.aspx

Carla Ulbrich

http://www.thesingingpatient.com
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How Is Lupus Diagnosed?

Lupus is diagnosed using a combination of symptoms and lab tests. Your medical history and that of your family's may also be taken into account. There is no one specific "lupus test." Here are some classic symptoms:

• extreme fatigue (tiredness)
• headaches
• painful or swollen joints
• fever
• anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)
• swelling (edema) in feet, legs, hands, and/or around eyes
• pain in chest on deep breathing (pleurisy)
• butterfly-shaped rash across cheeks and nose
• sun- or light-sensitivity (photosensitivity)
• hair loss
• abnormal blood clotting
• unexplained weight loss
• fingers turning white and/or blue when cold (Raynaud’s phenomenon)
• mouth or nose ulcers

 It used to be if you had 4 of the classic symptoms, they would diagnose you with lupus. But these days they seem to be a bit more hesitant to diagnose people with lupus. Don't know why.

Lab tests run when looking for lupus:

• complete blood count (CBC)
• urine test (for kidney involvement)

for autoimmune activity:

• Antinuclear antibodies (ANA)
• Antibodies to double-stranded DNA (anti-dsDNA)
• Antibodies to phospholipids (aPLs)
• Antibodies to Ro/SS-A and La/SS-B
• Antibodies to Sm
• Antibodies to RNP

for inflammation:

• Complement
• C-reactive protein (CRP)
• Erythrocyte sedimentation rate (ESR or "sed" rate) 

other:

• blood clotting time tests
• tissue biopsies (usually skin or kidney)

For more detailed info on these tests, go to http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?articleid=2242&zoneid=524

Unfortunately, lupus can look very different from one person to another, and also from month to month in the same person. The immune system is attacking the body's healthy tissues, and that could be any tissue. Heart, lungs, kidneys, brain, skin, you name it.

And for this reason it's not uncommon for someone with lupus to go to doctors for 2-5 years before finally getting diagnosed. I was first diagnosed with lung disease (um, no), then bronchitis (what? I wasn't even coughing- there was no phlegm! I've had bronchitis, I know bronchitis, and you sir are no bronchitis!)- the only helpful part about that was they threw antibiotics at me that made me far worse, and therefore easier to diagnose.

The next guess was Rhuematoid arthritis (getting warmer...), and finally, after a night in the ER and a desperate plea to God to just get me a diagnosis, I got a doctor the next day who took enough time with me to get the whole picture, and she diagnosed me. By that time I was so sick, it was easy to diagnose me (once someone listened to me for more than 5 seconds) because I had every single symptom and the horrible lab results. At that point it was so obvious even a caveman could do it...

For this reason, and because our brains and memories are not at their best when we're under attack, I believe it's very important that we keep our own symptom journal when we are actively ill, in order to help the doctors put it all together. It could greatly shorten the amount of time you spend in the waiting room, with no answers and nobody but Judge Judy to keep you company.

Well wishes-
Carla