Re: Please tell me this is as bad as it gets...
Ambugirl, I am so sorry you are having such a hard time right now. I think you are in one horrific flare up and I just have to hope that there is a way out of it and back to something that can be tolerated. Have you studied up on Lyrica at all? I can no longer take it due to severe constipation, but the help it gave was fairly miraculous. I called up doctors to say thanks; I think in our group, not a lot of that happens, you know. Don't give up.
Also, firmly tell you doctor how bad the pain is and the lack of sleep. You can handle anything better with sleep. I just had major surgery and I can't take pain pills. They gave me ambien and I slept through the usual pain plus the surgery pain. Even just a few days break in this cycle can mean the difference for you. You really have to address the lack of sleep.
Amitriptylene and flexiril are another couple of old, tried-and-true aids.
Take care, and please get ready for the doctor's visit by studying up on some of these meds. Magnesium (water soluble), folic acid, fish oil, centrum -- there are some supplements that are part of the whole treatment plan. If your doctor is not knowledgeable about all of this, see a pain specialist. Make sure you see someone who takes this seriously. The lack of sleep has to be taken seriously, ok?