Hey There - no one responded to your question yet so I thought I'd do so. For me, having lupus is VERY painful. I suffer from pains in the long bones of my legs and various other deep internal pains that seem to be caused from nothing ie. no swelling. Of course, this is all without the swelling - when my joints swell up sometimes I can't even make a fist or open my hand, can't bend my elbows to eat, can't walk without limping badly (hips), the list of my pains goes on and on. I'm relatively young (37) and was diagnosed with lupus when I was 22. None of the lupus meds I have taken over the years have worked much to decrease my pain levels (chloroquine, plaquenil, naproxen, prednisone, imuran, methotrexate, etc. the list goes on and on) so I have biweekly and monthly prescriptions for OxyIR 5mgs and demerol 50mgs. I realize that alot of doctors and people are against the use of narcotic pain relievers in chronic pain patients however, I truly believe that the only reason I am able to keep on working full time is because of my pain meds mixed with my regular lupus meds. This is why I mentioned my age - I was on disability for around 18 months and couldn't stand it anymore, the boredom... I have an Honours Degree from University, I need to work or I feel useless and hopeless. So, for me, with careful control because of addiction issues, I use prescription narcotics to relieve the lupus pain. I will also mention though that these meds were only given to me after 7 years of living with the pain and the amount that I take is carefully controlled by my rheumatologist and myself - here in Canada, I didn't have to go to a pain clinic to get this kind of medication, my rheumy prescribes it. I believe that in the U.S. it is normal practise to see a pain specialist or a pain clinic on a regular basis to go this route. Hopefully, when you get on your regular lupus meds, this alone will take care of most of your pain so you don't have to worry about the pain meds at all
Good Luck, Tis.