OMG my legs are refusing to work today! Both hips and knees keep locking up with added stabbing pain which sets off a cataplectic reaction and everything goes to Jell-O! Wow you mix RSD and arthritis with narcolepsy/cataplexy and it really sucks!

I should add that I can't walk very well at all. My legs keep trying to buckle and it feels like every muscle in my body starts to spasm. Anyone ever experience that? What do did you do?

I get the jello legs from time to time. Most of the times I've been lucky and have been at home or with friends who have been able to help me.

A couple of years ago, my Pain Doc decided I should use crutches when my jello legs happened right in front of him. I now use forearm crutches when I am outside of the house. My house is to small to use them inside.
If I don't use them while walking I pay for it later....because my muscles have to fight to keep me from falling.

Doc doesn't know for sure what causes this... only chalks it up to RSD.
He has ran many tests and can't find any other reason.

I wish you the best.
Abbie

I've been using a cane since July when the RSD spread all over and attacked all the old injuries in my legs. I can't use crutches because my left hand (original RSD trauma site) doesn't work. Kind of scary stuff today.

I've had a few falls in the past (thankfully with no big injuries!) with urinary incontinence with "jello legs" in the last few years. It was always when I was standing or walking for a few minutes, without any kind of support. I'm usually pretty sendentary/in the house. If I could catch myself and sit down, at least I didn't pee myself. Sorry if that's tmi folks !

I stated a walking program in April (not suggesting that everyone can do that......I had support stating in March with a cortisone injection to my L hip bursitis, restarting Cymbalta, major increase in narcotic dosages, and the incentive that my mom broke her back/was dx'd with Parkinson's....and I, the family nurse, couldn't do much to help.

I had quite a few issues when I started exercising, getting "stuck" when my legs just went to jello/overwhelming pain in both hips and knees (fibro issues, my RSD in L neck/arm). I just sat until I felt better. Had to make sure I had my cell phone with me, so I could call my 75 yo daddy to come rescue me if need be. Now that I'm more in shape (still have a loonnnggg way to go, but I am down 45 pounds and at least have some activity tolerance now), the jello legs happens much less frequently. I do know every rock to sit on and fence to lean on in my neighborhood and in my mom's neighborhood !

That's great that you're able to walk better!

I keep trying to convince myself that it's "all in my head." LOL But my knees and hips argue the point when I try to walk "normal." Besides the pain, it's like someone put too much WD-40 on them...they almost swivel LOL

I get this too...though it can affect different areas at different times and it tends to be in my right foot the most. There are just times where I cannot control my limbs at all. I had to work very hard in physical therapy to regain control of them after my spread last year (gosh...it's almost been 2 years since the spread).

Do you walk with a walker at all? I have a rolling walker and it helps me a LOT with things like this. I have a much better walking gait with the walker than I do without. This was especially helpful when I was doing physical therapy to get walking "normal" again. Might be worth looking into. Without the walker, it would not be safe or possible for me to leave the house, be out in crowds, and away from a comfy couch to sit on. Also good is that the walker has a seat so if I DO need to sit down and rest while out there is always a chair with me.

I don't think a walker would work for me because of my wrist and hand not working. In fact, that hand is in a splint right now because I injured it again...bent pinky down to my palm with the finger straight and I heard and felt the pop in my hand. Waiting for the MRI. Anyway, I'm not supposed to be using it...not that it works much but I had adapted so now I'm trying to adapt to this injury. So I'm afraid a walker is out since I can't put any weight on it. I may have to look at a wheelchair for outside the house.

when I was in the hospital my roommate, who had had a stroke, was given a walker with a higher extension on her bad side, so that she could lean on it with her elbow or underarm, rather like a crutch, but since it was part of a walker, no hand gripping/pressure necessary, just leaning on it. Do not know what it is called, but maybe from this description here you could ask about that possibility?

Maybe. Thanks for the suggestion. Definitely gonna have to do something other that the simple cane. I can't even count the number of times I almost fell yesterday, and twice would have fallen on my back if someone hadn't caught me. I laughed it off at the time, but it was pretty scary. Did I mention the back (especially lower) is an issue, as well? And it's killing today!!