Hi all, newbie here
I'm so frustrated, lack of diagnosis for my medical issues - and I guess, despite being 'given-up on' by multiple doctors, I'm kinda looking for someone, anyone to say I'm not just imagining my condition, that there IS indeed something wrong, and I'm not crazy or pushy for wanting to know what that is! I've read articles on soooo many different conditions and in all honesty, lupus seems to be the closest 'fit.' Let me tell you my story. I would appreciate any thoughts, I'm reaching despair.
I developed a rash a couple of years back. On my right elbow (outer), amazingly itchy (non-scarring), like, I'd actually break skin scratching. Then, after a few weeks, it disappeared from the elbow and seemed to 'jump' to the other elbow! A few weeks after that, it returned to the other elbow, so it was on both - then started to spread - it has since been on both arms, right down to wrists, and about halfway up upper arms. I saw 4 different GPs (over manyyy months, and numerous trips) about it, and each prescribed me topical cortisone creams (stronger and stronger with each subsequent visit)...and the stuff did NOTHING. Finally, a GP referred me to a dermatologist.
This doc took a couple biopsy punches, which came back with an 'I don't know' from the lab! They said it was not dermatitis or eczema, or this or that, but ultimately had no idea and suggested a tentative cutaneous lupus. So the derma put me on more blasted cortisone cream (again, didn't work), had me swear off soap/fragrance/perfume etc - and put me on plaquenil (?) for 5 weeks, to see if it did anything for the rash. It did. It *almost* completely disappeared! Even after 3 days, I was amazed at the difference! He then tested me for SLE, although he was fairly confident that I had cutaneous lupus. The tests came back as negative, and he said I even had a result for "ro" (?) that indicated that it wasn't even cutaneous lupus. So he tested for Ross River Fever (negative), and then basically gave-up and told me to just happily greet all my symptoms when they flare-up - obviously thought it was all psychosomatic or something
I'd told him that I had multiple 'issues' that all seemed to appear within the same 6mth time period, and seemed to be getting worse, or at very least flare-up together. He said that he was positive they were all connected...and then just gives up?!? But yeah, these symptoms are the reason I took interest in the possibility of my having some form of lupus...
* Rash (mainly arms. Occasionally on back, legs, forehead, neck). Made much worse by sun-exposure. Looks *kinda* like hives, but a LOT of them...during the worst flare-ups, it looks like a red/pink bubble wrap!
* Joint pain in knees, hips, elbows, shoulders, back, fingers. Crippling at times. Seriously, I'm only 32 and at times made groans like I'm a 90 y.o arthritic...I am actually 'double-jointed' but these days, I feel sooo stiff, especially in knees and fingers.
* High bodily temps although prior to a couple years ago I actually ran 'colder' than most people.
* Thinning hair that no remedy seems to fix. Started suddenly about 3 years ago.
* Extreme fatigue - no matter what I've been doing - to the extent that I can awake after a full nights' sleep, be up for an hour just doing general stuff and need a nap again.
* Eyes are considerably more sensitive to light.
* Acute anxiety and depression.
I know I can't rely on someone here to say 'oh yeah, that's *this*', but this does sound like lupus, right? I don't know what to do - I mean, the derma said the "ro" thing showed I didn't have lupus, but it's the only thing that seems to fit? Is it possible to have lupus and still have this test result? I'm so confused and so frustrated - I just want to know what's wrong with me, and seems like docs all just give-up when things get confusing...or assume it's all in my mind or something!