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Hi everyone. This is my first post. I haven't been diagnosed with lupus but my rheumatologist suspects it. I don't know if I should be posting here since I haven't been diagnosed yet but I really need to vent.

For about six years (maybe longer) I have been experiencing a ton of weird symptoms on and off. I kept going back to my family doctor for each individual one, not knowing they could possibly be related. Flu-like symptoms with fever but no flu; sore throat with no other cause; rashes on arms with seemingly no cause; EXTREME fatigue; joint pain, stiffness and swelling; hair loss; dry eyes; chest pain; mouth sores; serious brain fog, trouble finding words and remembering things; headaches and just generally feeling horrible all the time... after about four years my family doctor diagnosed me with fibromyalgia, and prescribed me amitriptyline. I am a personal trainer and live a very active life that was being seriously affected by how I was feeling... he told me to accept this diagnosis and change my lifestyle. This didn't sit well with me so I made another appointment and told him I would like to see a rheumatologist.

Within ten minutes of seeing me, the rheumatologist said I most certainly did not have fibromyalgia. I have been seeing her for 7 months now and she has sent me for a bunch of tests... all coming back normal except for a positive ANA (tested three times, positive every time) and anemia (despite being on iron pills). She also detected a heart murmur and sent me to a cardiologist. Turns out I have a valve defect with regurgitation. She also sent me to an opthamologist and I have very slight dry eye.

The test results are not matching how I'm feeling. I will be relieved if I don't have lupus but there has to be a reason for how I'm feeling. My rheumatologist says that there's definitely something going on and lupus is "flirting" with us.

I have a three-year-old daughter and my symptoms got severe when she was about five weeks old lasting until she was about a year old. (they are back on and off now but that period after my daughter's birth was the worst stretch of severe symptoms I've had). I had no idea what was wrong with me and thought it was normal for being a new mom... normal sleep deprivation feelings and hormones. Now that I look back, it wasn't normal. I feel like I missed out on the first year of her life, and I feel like now my symptoms sometimes hold me back from being the active, fun mama that I know is inside of me.

I see my rheumy again in May and she said at our last visit that she was going to start me on Plaquenil. So I'm hoping that makes a difference.

Thanks for listening/reading. There is no way to explain it to anyone (my husband, friends, parents, etc... most people who know me have no idea), the extent of how terrible I feel... so I came here. If you can relate, I'd love to hear from you.

Thanks. Nikki

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