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Post by billanschell on May 14, 2008 11:27:33 GMT -6
... it sounds like a song title, but it's actually what I wake up to.
Like many of you, I'm largely numb below the waist, and feel a mixture of pain and stiffness pretty constantly. But I've seen many PTs, and they all agree that my knees and ankles feel and test normal to them, despite all the stiffness in my own subjective experience. So it would seem that my discomfort is strictly the result of disruptions to the nerve signal path, and that what I'm feeling doesn't correspond to anything "real."
That's why it's so strange that when I first straighten my legs after waking up in the morning, they go nuts. (My wife can verify this; it's not just a bad dream). They shake like crazy for a few seconds, then my knees feel like they lock. After that happens, normalcy (as I know it) sets back in.
Does anyone else have that experience when they first wake up?
--Bill
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Post by ScrapHeap on May 14, 2008 11:43:35 GMT -6
Pretty much the same for me. At least in general terms. I wake up feeling fine-Almost normal for a matter of a few seconds. After that I feel like I awoke from a traffic accident. Stiffness from the neck to my ankles. All sorts of different pains. Throbbing, constant, electric shocks, etc. It only gets worse the moment I try to move anything below my neck. Consequently, I keep the Lyrica bottle and Multi-Vitamins right by my bed, recliner or sofa. Where ever I end up sleeping. I choke down both w/a very strong cup of coffee ASAP when I wake up.
I also get the crazy legs when I stretch or straighten them from a prone or reclined position. It isn't restricted to when I wake up. It's in general. Often leg cramps follow.
I wouldn't consider the effects being caused as the result of a false signal. More like a faulty signal. But I could be wrong.
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Post by Linda51 on May 14, 2008 11:54:32 GMT -6
From my experience clonus got better after the 2 year mark. It almost 14 years for me and I still have it some but nothing like the first few years. I use to have the morning cramps in my right calf but when I got back to my walking faithfully that help the cramps alots. The most problem I am facing now is when I get up it takes awhile for me to put my right foot all the way to the floor. It like I am tip toeing on my toes and I can't put the back of my heel to the floor so I stand a few minutes and hold on to the dresser then slowly my right foot touches the floor then I am okay. It very weird that I only starting to experience this again this long. Also like everyone else I have the stiffness in the morning.
~Linda
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Post by went on May 14, 2008 13:54:44 GMT -6
Well, unlike Linda, I'm approaching the two year mark here in about two weeks and my clonus is getting worse.
I have it all day long. Basically, anytime my feet touch something (E.G. the ground), my legs go crazy. My heel just repeatedly lifts up, and then my entire leg shakes.
I try to play it off as dancing, which kind of works because it looks ridiculous and I'm white, so my dancing would look ridiculous anyhow.
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Post by cindylee on May 14, 2008 14:06:46 GMT -6
I have the stiffness in the morning. And if I try to move too quick, my back/side spasms. So I have learned to ease my way into the day. If I try to put my socks on or put my feet in my shoes I get the cramps in the toes, foot and legs. Not just in the morning, anytime I try to put my feet in shoes they go wild. I have a new cramp to add to my repetoire...I get behind the knee cramps now if I am driving for awhile and don't stretch out the leg. On days when I do grocery shopping, by the end of the day I limp from the cramps and muscle spasm. I never knew about clonus until you guys gave it a name. I have had this all along. And no amount of stretching, moving takes mine away.
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Post by Joel on May 14, 2008 14:17:47 GMT -6
Ahhh. Nothing like the feel of clonus in the morning. Wasn't that a line from Apocalypse Now? I know we are mainstream now that we have scientific terms for goofy-legs syndrome. I get this most any time I've been sedentary for any length of time, particularly after just waking up. Cramps too. Makes getting up in the middle of the night to pee, a whole new adventure in itself.
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Post by msweeney on May 15, 2008 12:56:48 GMT -6
Bill:
First off, I'm mad that Joel beat me to the punchline because that line from "Apocalypse Now" is a classic. I have a similar chain of events in the morning, although I am not certain that it is clonus as much as spasticity. Clonus by definition involves alternating contraction and relaxation of a muscle. In my morning ritual my spasm is started by the involuntary stretch that moves down my leg, contracting muscles as it moves down the leg, culminating in my foot shaking uncontrollably for a brief time as the contraction reaches the end of the chain. Like Linda mine has improved somewhat over time. I believe this spasm is also made more severe by the fact that I am at the time when I need to take another dose of baclofen which helps control spasticity. Interesting to note that this same involuntary stretch occurs on my "functioning" side in much the same way but it does not have the foot shaking at the end. I have always thought because my brain receives feedback (proprioception) from my functioning side it does not go into this spasming.
When I stand to get out of bed my leg goes into involuntary contraction for a time. Like others I also have spasms after sitting for some time and then standing up and straightening my leg. Here, again, my leg muscles go into contraction and hold for a brief time. In this case my foot does not shake because I am weight bearing and have thus closed the chain.
Matt
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Post by Tmasgio on May 16, 2008 9:05:24 GMT -6
Question for all about this subject.
I have really tight muscles all day long in my lower back. Does anyone if there are any injections that relax these muscles and or nerve blocks? I have exhausted all possibilities.
This really prohibits me from doing alot of things.
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Post by ScrapHeap on May 17, 2008 13:10:46 GMT -6
In the past I have successfully thwarted quite a bit of the low back spasms w/Valium. I was taking a low dose 4x times a day but developed a slight dependency so got off of it. More recently I used another muscle relaxer in its place. It is Somas It worked just as well if not better than the valium and I had no withdrawals when I stopped taking it (no constant spasms so no need for it on a regular basis).
I understand that these are not injections but I'm sure they are available in that form for periodic use. At least I know Valium is. Not positive about Somas.
My apologies if you've already tried these and they didn't work. W/O knowing exactly what you have already tried, this is info that I have to offer-that which offered me at least some sort of significant, albeit temporary, relief from low back spasms.
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Post by tc on May 17, 2008 14:55:04 GMT -6
Tony, did you try a TENS machine yet? It's worth a trial. It stopped the spasms in my neck. The spasms return, if I stop using the TENS for a day . . . so it is only a temporary fix. Teresa
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