I was about 28 or 30 when I started to realize that the way I felt was proabably not normal. I became friends with a co-worker with MS. We talked about her symptoms and she was receptive and sympathetic to me concerning my own strange symptoms, some of which were like hers. Another co-worker brought me an article about chronic muscle pain, so I went to my Dr. and he confirmed a Dx of Fibro. He thought it was a result of depression. I never accepted that, I felt I suffered from occasional depression because I felt like crap most of the time. Not the other way around.
My brothers and I grew up in a house filled with tons of second hand smoke and suffered from allergies. My brother with Lupus and I also both had a terrible flu, head injuries and whiplash injuries. Mine were more minor, but I had more of them. We lived in FL and hung around outside when the mosquito trucks were spraying God knows what in the early 70s and swam in a lake where they dumped weed killer. As adults we were both exposed to chemicals on the job.
So, I'm thinking we had genes for SLE that were triggered by some or all of these things. He was finally Dx'd after his last accident when he fell from a roof. We were both Dx'd with Discoid Lupus before Systemic Lupus. He was Dx'd with Fibro just last month.
I spent over 10 grand out of pocket last year going to Dr. after Dr. and various PT treatments determined to get answers and help. I was told for years that since I had Discoid Lupus, it was very unlikely that I would go on to develop SLE. Whenever I went to a new Dr. and told them I had Fibro, they blamed my joint pain, dibilitating fatigue, headaches, nerve pain, etc. etc. on the fibro. I tried Savella, Lyrica and Cymbalta, but the only thing that helped was prednisone, Lunesta, xanax, pain meds, mindful meditation, warm baths and massage. Still they said it was fibro.
I finally went to a clinic 2 hours away that tests for dysautonomia in association with mitral valve prolapse. The Dr. there ordered a tilt table test, stress test, and echocardiogram (not my first) and Dx'd me with Dysautonomia. She then sent me for a sleep study. After that I got so bad I had to quit working for a while and it turned out I had mycoplasma infection (walking pneumonia). The MVP doc. then referred me to and endocrinologist and a RHeumatologist at UAB. My hormones were messed up so I started HRT. By the time I saw the Rheumy I'd been off of Plaquenil (for Duscoid Lupus that was appearently gone) for 1 year and Prednisone for a couple of months, my ANA came back really high. 1:1280.
So now I'm wondering if my gastro pain (since 2004) and my neuro. symptoms are due to SLE. I suppose I'll go back to my gastro and find a new Neurologist to re-evalute my symptoms in light of the SLE. I'm so tired and I hurt just about all the time now. All these Dr. appts. make my life even harder, and take the little bit of energy I have away from my kids, but I'm afraid something bad will happen if I don't go get checked out. I'm determined to get an accurate Dx...not just for me, but for my kids. Thanks goodness they are boys. Except my brother has it. So much for statistics.
My ESR (or SED) is always between 1 and 4. Maybe I have thick blood? I think I may also have high iron (like my brother). I also wonder about Marfans. My dad and aunt had the physical characteristics (MVP, long limbs, crowded teeth) and my half sister died suddenly at age 55. So, I guess I'll also go see if my Cardiologist will take a look at my aorta. I suspect that he will take me more seriously now that I have SLE.
I expect to feeling better 6 months from now after the Plaquenil kicks in, but so many patients here have had kidney transplants. Such brave people. It scares me to think I could have organ damage.