Originally the rheumatologist said I had Lupus CNS, but now that I've had severe joint pain and swelling along with scleroderma symptoms and muscle inflammation, the doctor wants to reserve his opinion for now. I am on 1200 mg of Ibruprofen and will probably be switched to Celebrex in a week or two. Aside from my hip, the pain and has ceased. I guess the whole back of both knees are swollen (the center knob and both sides w/indentation). I don't understand why the front isn't swollen. The left knee still pops out of joint now and again but is much better. Both knees look about the same in swelling. All I know for certain is I have a connective tissue and rheumatic disease. The doctor said it's just like RA but I don't have a high SED rate and a negative Rh factor. Although the medication helps a lot, I still have a lot of stiffness in most of my joints.
You are probably right, I'm kind of picky about how my body looks. Kind of sad too, because a lot of negative appearance changes have occured over the last year. Before it was just internal. I lost all my teeth last year because of "lack of oxygen" and most people didn't even notice. I don't want to get to "freaky" looking though. Hopefully, the swelling won't be long term, but it has been over six months of progression though. 10 months ago I started with skin changes (tight/thick/shiny/scaly skin, rashes and swollen tendons and ligaments) and the joint problems. The skin is starting to lossen up some but the joints are progressing. The Lupus part just comes and goes at will - attacks an organ/system, disappears, then attacks somewhere's else. The length of stay is anyone's guess. I have had symptoms for over 10 years now. I guess we will see what happens. Thank you for your reply - Kris
Hi Kris, I'm sure you know this already, but it is possible to have RA without a positive RF, and it's possible to have a positive RF, but not have RA. Both ANA and RF are not specific to RA or SLE, but can be found in both. It's possible that you have both RA and SLE. From what I understand, swelling does not normally accompany Lupus arthritis, so I would think RA may very well be part of what you have. From what you've described, perhaps it is MCTD? In any case, I'm sure that Erin is right--how we see our bodies is probably 10x worse than how other people see us. I am my own worst critic! I hope you get the swelling under control soon.
Hi Ducky, feeling alright today. Just the usual stiff w/hip pain. The weather here has helped some, but makes me more tired. My rheumatic stuff doesn't like the cold and my Lupus doesn't like the heat. Unfortunately, I love hot weather. The days have been so beautiful here in New Jersey. The only problem with living on the shore is that there aren't too many indoor things to do around here. So, how have you been? Saw your list, quite extensive. Is there something major going on with you or is it a multitude of autoimmune diseases that are separate? Guess it doesn't matter much, huh... it is what it is. I wish there was a cure-all. Would like to try the Prednisone but my immune system is shot. Are the meds working for you? I'm surprised with the constant UTI's that they gave your the Prednisone and steroids. My UTI's are Staph and Strept infections that are drug resistant along with the other UTI infections. I get them severe at least twice a year. Are your's similar? Also what is Graves disease of the eyes? I had Hashimotos Disease in the past-so I'm the opposite there. But, man, my eyes give me a hard time, vision constantly in and out. Please write back when you can and thanks for your concern - Kris