You sound alot like me, with many of the same symptoms. My miseries come and go in flares or batches every 3 or 4 months or so. I actually keep a diary and finally after 2 years am starting to see a pattern, sort of. I have cns lupus, and the 'brain fog' on top of exhaustion too great to even describe, was one of the biggest reasons I had to stop working. And, It's very embarrassing to fall in public. Now that I am home every day, one of my biggest issues is the reality I am still as sick as I am. I guess I sorta thought I would be miraculously healed, all better, healthy...... lupus free. One big issue is I have not had frequent, prolonged respiratory infections like I used to. I see a family dr, rheumy and neurologist regularly. My neuro defers to the rheumy, my family dr to the rheumy and the rheumy punts everything back to the primary and it all sort a works. So I see my family dr the most. Before I retired on disability this past June, I was seeing a dr. every 3 months. If I stopped treatment, within a week I wouldn't be able to get out of bed because of the joint pain and inflammation, my nerves would be screaming so loud I couldn't hear them over the pounding in my head and rt ear, my left leg would be numb, I couldn't swallow and I would WANT to be dead. And as my rheumy explained at length.... treating lupus today will help ward off worse problems in the future. Hang tough suetoo
God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. Vit. B12 2400 mcgs, Vit D 1000U and Ambien every night.