In glad you mentioned fluorescent light sources and other light--I thought i waa the only one!
I think it's time for me to find another health plan. In in pain management, neuro, rheum, regular md, chronic pain therapist, at Kaiser and they don't do Jack. It's heart breaking. In in the bay area (uc Berkeley) do you have any suggestions?
All you've been given for 16 years are pain meds?
What about Plaquenil, Prednisone, Cellcept, Imuran, MTX, Benylsta - there are many treatments available for SLE. Some of us achieve remission with these meds!
Anyway, you asked about heat - really the only thing to do is to avoid it! Our bodies have a physical allergy to the sun (and certain other light sources, esp. florescent), the rash is often inflammation. Air conditioning and avoiding overheating is imperative. Exercise can be taken in a cool room with cold water available.