I have CNS (Central Nervous System) lupus, (FM) Fibromyalgia, and anticardiolipin antibodies (Lupus Anticoagulant Syndrome). My blood tests are inconclusive at times too. Thank goodness my rheumatologist looked at my long medical history and put all the puzzle pieces together!!!

Three-day IV methylprednisolone (intravenious steroid therapy) seems to have worked up until lately. I have been hospitalized on several occassions for this treatment whenever the CNS symptoms escalated. Unfortunately, this form of treatment seems have recently become less effective. I am now experiencing what is called a "steriod-induced myopathy" from this!!!! This condition is a side-effect of corticosteoids characterized by muscle weakness which worsens with exercise.

The CNS symtoms lead to being tested me for MS (Multiple Sclerosis) on three different occassion, but lab results have remained negative thus far. I experience lots of problems with muscle weakness, tremor, muscle fatigue (which is different from everyday fatigue, which I "try" to explain to my neurologist). My muscles continue to get weaker as I use them more, though this, I realize is the result of prednisone use. Yet, since there is no cure for Lupus, the best we can aim for is effective treatment for the "symptoms". Unfortunately, Prednisone remains the most effective at this point, which produces a wide variety of potentially serious conditions of its own. And for those of us with Lupus AND FM, we must take Prednisone for the Lupus inflammations, yet the Lupus treatment exacerbates the symptoms of Fibrommyalgia!!

I hope sharing my story here will help someone else as much as reading other people's stories has helped me.