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Hi! I'm new to this board and have never posted before but hoping I can get some answers and support from this to make myself not feel crazy. I've been experiencing pain in my hands for a year or so now. I have a pacemaker due to Inappropriate Sinus Tachycardia—paroxysmal A-V junctional tachycardia. I've had several ablations and was diagnosed with IBS in 2007 and my dad has Ulcerative Colitis. I've had frequent bouts of pleurisy and ended up in the ICU with pericardial effusion after my last lead replacement in 2013. I had chronic UTIs approximately 9 years ago (just had another severe UTI back in April with blood in my urine). I've gone into premature labor with all my kids (1st was at 33 weeks and third child at 30 weeks with no known cause), and sadly lost our second boy at 19 weeks 5 days with no cause determined. My last round of pleuricy and pericarditis was in February and that is when my cardiologist decided to do some lab work with suspicion of rheumatoid arthritis or Lupus. He had me on 200 mg of Ibuprofen every 4-6 hours 3 days prior to my lab work (love waiting for insurance referrals) and my results weren't horrible but they were:

Positive ANA (1:160 Titer - Homogenous and Speckled)
Sed Rate - 32
RBC - 3.65
Hgb - 11.4
HCT - 34

Since then I have been to my rheumatologist twice. My first visit he drew a ton of lab work for lupus anticoagulant. All labs came back normal but I felt fine during that visit. He put me on 7.5 mg of Meloxicam which has helped with my joint pain and stiffness. He hasn't officially diagnosed me but said that if I have the early onset of Lupus he would treat me the way he is currently. I went back to my cardiologist a couple of months ago due to palpitations, skipped beats and he put me on Flecainide. He asked me about my other symptoms and asked if I have been diagnosed with Lupus yet because he feels strongly based on my medical history and was surprised no one else thought to check me for an autoimmune disease with how often I get inflammation around my heart/lungs. I went into the doctor (GP) on Wednesday for some lower back and upper right stomach pain and he checked for inflammation and my liver, kidney function and everything came back normal. I woke up Thursday and my hands hurt so bad I can barely use them. I'm wondering if I can have an active "flare" without a high Sed Rate? Just looking for some support because my GP doesn't think I have anything but doesn't spend a great deal of time with me, my Rheumatologist is on the fence, but my cardiologist feels strongly (I've seen him for almost 20 years) that I have Lupus and is a little frustrated that I haven't been diagnosed with it so I'm at a loss as to who to listen to since I'm getting mixed answers. I tend to listen more to my cardiologist just because I've been with him for so long, but I'm trying not to jump the gun either. Aside from everything else, I get a red lace type rash on my forearms when I'm in the sun. I also have weird lumps in my veins on my forearms and by my elbows that no one seems to know what they are and I keep getting more of them. I also go through ups and downs with severe fatigue and loss of appetite, loss of balance, and what I assume is brain fog (can't concentrate, and seem to say things that don't make sense). I'm looking to get some advice on what my next steps need to be. I feel a great deal of pain but with my labs coming back normal the past two times I feel a little stupid going back in to the doctor since I was just in on Wednesday. I was raised to not go unless I think I'm dying but my next appointment with my rheumatologist isn't until December. Any thougts?





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