Hi Blissy10. One of the many unfortunate things about autoimmune diseases is that symptoms often appear long before antibodies become lab positive. I was sick for 2 years before being diagnosed with lupus and like you fibro was diagnosed first. Fibro is diagnosed with history and physical exam (pressure points) and ya don't have to wait for antibodies to develop. I have secondary Sjogren's and have had swollen salivary glands under my jaws, under my tongue, the bottom of my mouth, and swollen parotid glands all of which are painful so I'm sorry you are going thru this for so very long.
I'm an educated woman who worked a demanding job when I became sick. My rheumy's goal (besides diagnosing as many autoimmune diseases in me as possible ;) was to keep me working. He put me on Plaquenil before my lupus diagnosis partly because it takes so long for patients to respond. My psychiatrist gave me Provigil to help with the energy and Ambien for restorative sleep. That 20 hours you're getting is restful sleep. My employer transferred me to a desk job. Even with this I would get home from work, eat (frozen comfort food), bathe (sometimes asking Hubby to turn the faucets on), sleep, repeat.
Regardless, 4 years later I had to apply for disability. I know I'm rambling, but this last tidbit is very important: obtain medical records from every physician you have seen since your illness began and all medications. If you do still work, you need to be able to show that they and you have made an effort to find less demanding work for you. You can still get disability, but the letters from your docs stating you are unable to work will need to be excellent letters. Please keep us posted okay? Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry