Hi there...this is my first post. I was "unofficially" diagnosed with lupus four years ago. I have a neg. ANA but have the malar rash, EXTREME photosensetivity, joint inflamation, pleurasy, chronic migraines, night sweats, swolen glands (I actually had a lymph node biopsy b/c they originally thought I might have lymphoma), nasal and mouth ulsers (almost constantly), multiple tendonitis and bursas, irritable bowel syndrome and horrible fatigue. My rheumy treats me for the symptoms of lupus but my medical record says I have arthroalghias. To top it off, I was diagnosed with degenerative disk disease last year which wouldn't normally be a major issue but the lupus has inflamed the faced joints in the degenerating disks. When I get facet injections to help with the pain I have worse pain for a week b/c my lupus adversely reacts to the intrusion of the injection. My latest problem is CONSTANT migraines. My neuro and I are trying everything under the sun to figure out a solution, but lupus migraines are usually pretty hard to solve...go figure. When I want to feel sorry for myself, which I really try hard not to do, I start to think this disease is the work of the devil.
I am 31 years old, married and the mother of an eight year old daughter who is the center of my world. She is suffering horribly because she feels like she needs to take care of me, even thought I work so hard keep her from seeing my pain. I have a pill box the size of a photo box. I take prednisone, plaquinel, neurontin, lexapro, topamax, tramadol, nortriptlyline, miralax, and vicodin when needed.
Thanks for listening...just needed to vent. My mom had RA and she and I usually vent to each other but sometimes I feel bad using her as a sounding board for my crap b/c I think deep inside she feels guilty b/c her side of the family may have given me the lupus. She's the best thing in the world and I'd take her pain away from her in a second and she'd do the same for me...and unfortunately neither of us can do a darn thing for the other.