VeeJ

Willow, hello. I had problems from childhood on. Like you, I took a big hit in early adolescence, passed off as "shin splints" or "growing pains". All sorts of things thru the years: anemia, joint & long bone pain, chronic GI & urinary problems, weight loss, fatigue, elevated sed rate & depressed WBC, migraines, etc.

In my 40's, I was finally Dx'ed with SCLE = subacute cutaneous lupus erythematosus. SCLE was given its own unique definition only in 1978 or so, so it's the "new kid on the block". It's thought to be an intermediate form. 50% meet 4 or more of the SLE diagnostic criteria, but, even so, many with SCLE remain milder than those with classic SLE. Anti-Ro is the predominant autoantibody. As many as 30% are ANA-negative, because in some people, anti-Ro seemingly "masks" the ANA results. (I was ANA-negative, and this stymied Dx greatly.)

I never had a facial rash but had years of annular (targetlike) nonscarring rashes on my arms & torso, which is one of two defining rashes for SCLE. The other SCLE-specific rash is called psoriasiform, or papulosquamous: that one looks like psoriasis but isn't & can affect any part of the body. People with SCLE are also "eligible" for discoid (scarring) rashes and malar (butterfly) rashes. (I got a single "discoid", on my face, naturally.)

FYI, SCLE favors women of Western European heritage. (That fits me, too.) The median age of Dx is in early 40's, though many have had subacute problems for years. (In this context, "subacute" means basically non-life thretening; it does NOT mean "well".)

You could find more on SCLE by using the search box above. If there's anything here that rings any bells with you, just give a yell, OK? Best wishes, from Vee (P.S. Plaquenil & sun avoidance have helped a lot, but I still have chronic episodes of fatigue & pain.)