Good morning, iwhispering.
First I want to call to your attention the two "sticky" (unmoving) posts at the very beginning of this board, posted by "AngelicBrat". Her posts list (1) the Am. College of Rheumatology (ACR) "4 of 11" criteria for Dx'ing *systemic lupus* ( = SLE, which is full-blown, "big" lupus); (2) a set of "alternative criteria" not= the ACR criteria, developed by Dr. Hughes, a world-known English lupus specialist; and (3) symptoms and criteria for "APS" = antiphospholipid syndrome = Hughes's syndrome = "sticky blood" syndrome.
To those long lists, I first want to add anothet thought. There are also several subsets of lupus that are *not* identical to full-blown SLE, one of which *may* be of interest to you.
That "subset" is called "SCLE", which stands for subacute cutaneous lupus erythematosus. Its typical rash is different than the "malar" (butterfly) rash that is strongly associated with full SLE. In contrast, the SCLE rash favors the upper body (arms, back, chest, occasionally face). It's typically nonscarring and non-depigmenting. Patients do NOT need "4" of the "11" to be Dx'ed with this, but many do score a "4" or more. Only about 70% of SCLE patients have a positive ANA; also, about 70% have anti-Ro autoantibodies. SCLE is considered an intermediate form of lupus, falling between SLE and DLE. SCLE symptoms can actually span the entire range of *SLE* symptoms, but the worst ones (kidney & CNS involvement) are not as statistically likely. About 50% of SCLE people stay mild; the other 50% go deeper.
(The other main "subset" of lupus is DLE = "discoid" LE. This is the mildest of the main lupus groups. Patients do not have to have anything more than a rash biopsy result to get this Dx. But since the rashes can scar and depigment, the cosmetic implications can be substantial.)
Anyway, you ask if your symptoms could suggest lupus... I'm for sure no doctor! However, I do think what you describe suggests that your doctors at least consider lupus... But I suspect they have already, actually...
Have you seen a rheumatologist? A dermatologist? A rash biopsy in someone fortunate (??!) enough to have a rash can be a powerful disgnostic head-start, esp. in the lupus subsets where ANA can often be negative and in patients who do not have the "big" autoantibodies that are very strongly correlated to full SLE.
Speaking from my own (muddled!) experience, I had SCLE rashes for years but stayed stubbornly ANA-negative and anti-Ro negative. My problems were severe IBS; "cluster" headaches; joint pain & stiffness; burning arthritis pain along the long bones of legs and arms; lower back stiffness & muscle spasms; anemia; irritable bladder; urinary & kidney stones; depressed complement level; white blood count off; low-grade fevers; hair breakage; and in my early years, pneumonia & what was thought to be encephalitis. My most constant symptom [drum roll
] was fatigue---big and ugly!
After years of stuff like this, I also started getting neurological tingling, which scared the heck out of me; was also dropping things right and left, sitting down abruptly, etc. (I *think* anemia can also cause such neuropsychiatric symptoms.) At that point, I really started to worry.
Anyway, I know another woman with SCLE who did get a rash that whitened & depigmented her facial skin. I believe her doctors at first called it "DLE", but that eventally they deemed it "SCLE"...
Aftre years of doctoring locally, I switched (on my own volition) to a teaching hospital rheumie, one all of a 25-minute train ride away. (Why, oh why, did I wait so long? I was a dufus???) He proved so much more advanced at knowing subsets, the odder case, etc. and Dx'ed me in less than a month. And made it all look really easy. He didn't even break a sweat.
Other than rheumies, neurologists, &/or dermatologists, have you seen a cardiologist for your chest pain? A pulmonologist (for your coughing and fluid buildup)?
Please do stay in touch! I'm sure you'll get other responses soon. I hope you can arm yourself with a more questions & observations to take with you on your next dr. appts. Meanwhile, thinking of you and strongly encouraging you to keep trying and not waver until you get answers and treatment for all that you describe in your post. All my best to you, from Vee