[LizaJane]

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?

[Jomar]

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

[dahlek]

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?

[Aussie99]

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?

[mrsD]

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.

[LizaJane]

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.

[Silverlady]

I've just read your last post and you have just described what was going on the two weeks before I was hospitalized. The slightest movement of my lower body started twitching and really unstoppable pain. Then the upper body started twitching. This has just now lessened. I asked why my legs were hurting. When a sacrum is fractured it makes muscles go into fast forward mode. When the muscles are swollen around the nerves it makes the nerves over react. The first day I was in the hospital, I was semi conscious but I could feel the twitching of my body, first a leg, then a arm, then a ripple up one side of my back, then a foot, it seemed that my body was doing a painful dance. Just trying to untense a muscle was excruciatingly painful. Some of them still are. I'm wondering if your nerves and muscles are over reacting to the injury you have in your spine.

Billye

[HeyJoe]

Have some Dove Bars on me, even a chocolate egg cream on Ave. A. As you know, and from what i have read RSD has to be treated aggressively early. The fact that this may complicate your healing due to the need for inflammation is terribly upsetting to you i know. I dont have any answers as to that. I just wanted to let you know that i do understand the complexity of the dilemma that you are trying to find your way through, and hope that you get through this as quickly as possible.

[MelodyL]

That way, we get the body we want, we can eat Dove Bars all day long.

AND MUFFINS.

The body I would choose?????

hmmm. Jessica Alba's body.

Any day!!!!

[Silverlady]

Jane,
What are you taking for pain relief? Is it something new? Have you started anything new?

This is serious business and I know how fast my pain got out of hand this last week. They lifted me onto the emergency gurney in a sling. I could not stand any movement. And I take a LOT of pain without whimpering. The inflammation got so bad so fast, it was overnight. I got up once during the night in pain and then couldn't get up at all in the morning. You need someone, neuro or whatever to intervene before this does get worse before it does become RSD if it hasn't already.

Is there any color change in the leg or mottling or swelling?

Billye