Hi danijay - I'm new to being "diagnosed" with lupus and I also have pretty severe fibro. This post really caught my attention because the biggest problems I used to have was back pain. Lately I've had this horrendous lupus pain and my joints completely swell, then my fibro gets horrible from the tension of the pain. about a week and a half ago I ended up in the ER with excrutiating leg pain. it felt like I had knives in my hips, knees and ankles and then just crushed bones the whole rest of the way down. Even when they gave me IV diluadid it took the edge off for an hour or so and that was it.
The attending wanted to increase my plaquenil and go back to 40 mg of prednisone for a week, then 20 then 10. He also wanted to send me home with some hydromorphone to get me through the pain - and granted I'm only 26, but have had 5 major surgeries, kidney stones....so when I say i'm in pain im not exaggerating. Well then his resident decided he was going to "completely disregard his attendings orders" in his own words and said he didn't want to give pain meds out...even though he was with me for 5 minutes and the attending was with me the 11 hours I was there....grrr...well anyway the point is...when I got to my Rheumy the next day for follow up she decided to take me off prednisone all together as I'd been on and off it for a while with not any change. Instead she put me on 16 mg of Medrol ( a different corticosteroid) and said some people just respond better to different steroids. I was on 16 mg for 7 days then to cut it in half.
I had been in so much pain for months...to the point some days I couldn't walk...used a cane...had a wheelchair on hand. and about 4 days into the Medrol i started to feel like a normal person...I almost started to cry...even though I had some knee pain still...I didn't feel like a boulder was on my legs...I didn't want to cry all day. However I went down to the half after 7 days and 2 days into that I went back into this extreme pain and its been over the weekend...its been so horrible even the percocet doesnt touch the pain. So I went back to the full 16 mg and am supposed to stay on that for a while...only problem is side effects can be nasty. They can leave nasty little fat deposits in your neck and other places. It was worth it to feel like a normal person for 2 days and that was so awesome.
In any case - I've just never come across someone describing the leg pain to the extent I had mine. Also, not that it's a cure-all but maybe a different type of steroid could work for you too?
All the luck in the world....I know what this is like - can't even sleep and is difficult. good luck!