My entire left leg hurts from the slightest movement at my hip. Not ALL the time, but enough that it's scarey. Sometimes when I bend, the pain goes from my back to encircle to torso. Feels like my entire torso, every muscle, has nerves on fire.

Is this what RSD is? What stops it?

Hi LizaJane- pop over to our RSD forum- we have many useful stickies too-
http://neurotalk.psychcentral.com/forumdisplay.php?f=21

and Bobbi's right, it is one step lower on the 'menu'! - j

http://www.rsds.org/3/clinical_guidelines/index.html

I guess we aren't alone?

There are some who say Fibromyalgia is a generalised RSD. I don't know. I do know that I don't have the classic PN pain that much anymore. Now I have general muscle pain,fatigue,tightness,tender areas and so forth. I think PN can transform itself and feel like other things are going on at times. Maybe it's even healing?

but my seminar covered "triggers" for fibro... and chronic peripheral pain is one trigger. If one has the genetic up regulation for pain perception, fibromyalgia can result.

For what it is worth, I have had leg pain like that. I ice my back, rest in bed
and take ibuprofen (or any other NSAID for a day or two).

RSD has swelling, discoloration of the limb and other signs. It is thought to be an error of the sympathetic nervous system. Some people with RSD develop fibro too.

Thanks guys, I'm looking at the crps forum (rsd), and I do think that's what's happening to me. The slightest movement of my hip, and I mean SLIGHT, can cause excruciating pain. It's spreading to the other hip. The pain is total, my entire leg, and deeper than anything I've experienced before. The aching in my butt is ceaseless now, even lying in bed. It's not awful; it's the pain with movements that's awful. If that became constant and predictable, I'd want to be in a total body cast, that's how bad it feels. It's way out of proportion to the size of the movements or stress. Also, just slight pressure causes pain out of proportion.

And, one more thing, as if that weren't enough: I'm getting myotonic jerking movements. When I was first put on oxycontin after the surgery I developed myoclonus--that's an involuntary movement of large muscle groups, and a startle reaction to sounds which is huge, could cause my whole body to jack-knife. My doctor stopped the oxy and put me on Klonopin, and it went away. But it's come back again, and I'm not taking oxycontin anymore. When I lie in bed or relax there are jerking movements, slow, almost rhythmical, of an entire, leg, arm, shoulder, or head. It's rather disconcerting.

So I'm alarmed. I feel like I've got so many problems going on that finding the right doctors and treatment is going to be even more overwhelming than it has been.

For what it's worth, CRPS or RSD, is auto-immune. I have the genetic marker for it, so I was worried going into the surgery. When you get tested for gluten markers, HLA class I antigens is the test, one of the genes they test for that is a "lesser" gene for gluten (Im not sure this is really true, but Dr Fine of gluten-testing labs says so) is also the gene for RSD.

So it's back to auto immune. One thing that worries me, as if there aren't a million, is that fusing the back depends on having inflammation and not suppressing it. Getting rid of Regional Pain syndrome seems to depend upon decreasing iflammation.

I have a lot more reading to do, and I feel less and less up to it.

Overwhelmed, and a bit prone to feeling near hysterical, no, obsessed, over figuring it out.

I need Dove Bars more than information just now.

Hi LizaJane, I have had RSD in both legs for going on 5 years now, and I was diagnosed with CIDP 2 years ago. I do not experience pain directly associated to any specific movements. What does hurt is when something rubs against me when I am moving, sometimes the wind hurts my legs. I have had 2 Doctors tell me that they think that my CIDP is a natural progression of the RSD. Who knows ? I can tell you I cannot differentiate the RSD pain from the CIDP pain. They are the same if you ask me. I do not get pain from movement alone. I do REALLY hope your pain goes away, DO NOT LET IT GET THE BETTER OF YOU!
BIRD