I suffer with chronic severe pain 24/7 no matter what I do for it. I'm also always in a flare up it seems, I've tried the all of the various medications out there to treat lupus and NONE of them have worked for me.
Like Joy said Fibro produces huge amounts of severe pain. I also have RA, Osteoarthritis, pleurisy and percarditis all the time. So, I'm sure you can imagine the amount of pain I deal with on a daily basis. I totally understand how you feel with your pain.
I totally get you're frustrated with taking the steroids and plaquenil. I've been on steroids daily for over 14 years now. I've been told over and over again by my Doctor's that this is as good as I'm going to get. That I need to learn to live with it.
I cried for days after being told that, but they are right about it. Unless, I'm on 50mgs or more of steroids my pain is constant and NEVER leave me. Now, if I'm on those steroids at 50+mgs of steroids, my pain is almost totally gone. I can't live on large doses of prednisone, so I try other things to help manage my pain.
Have you thought about trying massages, acupuncture, Biofeedback, meditation, heat/ice, PT, and a Pain Therapist. If you've not tried any of those listed maybe you could at least try one or two and see if they help at all.
The pain we deal with I believe is just part of having lupus. I really hope that you find something that helps with your pain. So that you're happy with the level your at pain is at. Please keep positing and updating us so we know how you're doing.
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.