What a roller coaster ride we're on! So, after getting super frustrated with my present rheumatologist, I visited 2 others. They both told me I did not have lupus. One said, "all you have is fibromyalgia" with such contempt in his tone of voice I really wanted to hit him. The other did a mound of tests including mri of my left hand and concluded since the tests didn't show anything, I don't have ANYTHING. Yeah, its all in my head! So I went back to my original rheumatologist. I told him my experience with the other 2. He then said he doesn't remember telling me he suspected lupus. ARE YOU SERIOUS?? I told him regardless what he "remembers or not", I still have pain crushing fatigue. He's left me on Plaquenil and changed my anti-inflammatory from Voltaren to flurbiprofen. Now, though, my primary has found my liver enzymes to be elevated (ALT 107 and ALS 43). Getting that rechecked on the 13th. Also my newest symptom in addition to morning stiffness, lower back pain( I had to see a physical therapist for), painful walking because my feet and achillies tendon hurt so bad, is I notice when I'm outside for any length of time my cheekbone area gets red. It stays red for hours even after I come back inside. It's redder on my right side, but my left still gets red. There's also a little puffiness that sometimes occurs with it. Could that be the beginning of the butterfly rash? It doesn't itch and so far I haven't seen any bumps. So that's what's going on for someone who doesn't have ANYTHING. I know many of you can sympathize.
I'm sorry you're having such a hard time with doctors. It makes me laugh when they put you on Plaquenil, but won't say that you have lupus. My rheum put me on Plaquenil, but he hasn't officially said "you have lupus" I know it's coming, probably at this next visit. Why would they put you on it if it's all in your head?
Your redness very well could be the beginnings of the butterfly rash. I've never had it, but it definitely sounds like you have some type of photosensitivity going on.
I'm terrified to change rheumies for that very same reason! My current rheumy seemed to look at all my past history of symptoms, and said she was certain I had lupus. No doubt. But, she relies on iv's for administering steroids for flares and a vitamin/mineral iv. They work, but I don't feel like sitting in the doctors office for 1-3 hours ivs when a shot or pills would work. Plus, she must have joined a doctor's group, because the whole staff, except one, has been replaced by temps. I just wanted a doctor I feel more confidence with. The ONLY reason I haven't gone to someone else is that I am terrified they will tell me I don't have lupus and it's all in my head. It's bad enough to be suffering with lupus symptoms, but having doctor stress as well....argh.
The one thing I've learned in all this is: Dr.'s don't know everything! Listening to our bodies is sooo important. After all we're the ones who live in them, not the dr.'s. Artchick, I don't know if I'd be able to sit in a dr.'s office for that length of time every time a flare appeared. Of course I'm no fan of steroids either. We gotta keep fighting!
i have been sick for years and still dont have a for sure diagnosis i have "borderline lupus" and am not being treated, but, she does listen and i have developed new symptoms like the rash on brown patches, not to mention my throat is dry i cant swollow-she thought i might have sjorgens? who knows, but 10 years or so ago a rheumy told me that is was psychosymatic, i got so down and bogged out that i gave up, didnt get any care and now my body is a mess and my life has completely changed, dont give up, i know how hard it is but you keep going to your doctor and you find out what is wrong with you dont let it get so bad you cant function like i did.