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Tone in Legs Driving Me Crazy!

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  • #16
    As I back off my pump I am seeing this too. I'm down to a very low setting( 10% of what it was last year).

    Usually on my way up to sitting on the stationary bike. It's nice to stand on stiff legs! I try to flex and stand do to muscles, however. After and hour of spinning my legs still will stiffen as I transfer back down to my chair. Pat

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    • #17
      Wheelieboy,
      How are your spasms/tone at night while sleeping?
      I'm 6 1/2 mos. post, C-4 incomplete asia C, blah, blah and I've been experiencing spasms/tone even as early as 1 mo. post. My spasms have changed though. Was quads, now hip flexors and hamstrings. At night they get worse. I too am off baclofen because Project Walk and for all the right reasons. P-Dub see's the spasms and tone as recovery. Besides, it keeps my legs strong for when I start to walk.
      Don't get on the bac pump! Standing frame and exercise! Be active, not passive.
      Injured May 19, 2006, C4 incomplete

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      • #18
        I've got a baclofen pump, on the lower setting, do alot of excersise, walking crawling , gettting down on the ground, to do stuff, but I also have Botox injections in the legs, this helps alot, I know within two weeks when I need them. I just had a round of shots, and for the second time I will get sick for a day or two, but it goes away. It does aleviate the pain and my range of motion increases pretty good for a couple of months. But I am not a normal duck, you might want to try it.

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        • #19
          Originally posted by hapahouli
          Wheelieboy,
          How are your spasms/tone at night while sleeping?
          I'm 6 1/2 mos. post, C-4 incomplete asia C, blah, blah and I've been experiencing spasms/tone even as early as 1 mo. post. My spasms have changed though. Was quads, now hip flexors and hamstrings. At night they get worse. I too am off baclofen because Project Walk and for all the right reasons. P-Dub see's the spasms and tone as recovery. Besides, it keeps my legs strong for when I start to walk.
          Don't get on the bac pump! Standing frame and exercise! Be active, not passive.
          No problems at all while sleeping at night. I hop into the bed and off to dream land. They don't kick or try and roll me in bed. Guess that's a good thing.

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          • #20
            I have the baclofen pump and love it. went years with uncontrollable tone in my lower extreminies. Had to sleep in fetal positoin most of the night because I couldn't straighten out very well. My increased tone didn't come though until I was about 20 years post. By the way mayc0, I'm sure you know this but if you go to canada you can meet Mary Jane in person and on the up and up. Unfortunately here you can't, but as we all know it's all about money

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            • #21
              i've had success lately at getting my tone to chill out with magnesium supplements + multi v's. i'm 80mg of baclofin but would like to pare it down.

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              • #22
                In my experience, be careful with mangnesiu. Long befire I was spastic my doc gave it it me IM for some other reason, and I got really weak and my orthostatic hypotension got a lot worse. Don't know if there is any advantage over baclofen.

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                • #23
                  how much pain do you have

                  i have same thing going on i had a baclofen pump put in to try and get a grip on my fucken legs the pain that came with is so bad didaudid cant even give me a break iam a t5-t6 avm 6 years pain started about half a year after operation whats sad is i have kicked the crap out of every one i love good luck and i pray the burning never gets you

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                  • #24
                    how much pain do you have

                    i have same thing going on i had a baclofen pump put in to try and get a grip on my fucken legs the pain that came with is so bad didaudid cant even give me a break iam a t5-t6 avm 6 years pain started about half a year after operation whats sad is i have kicked the crap out of every one i love good luck and i pray the burning never gets you

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                    • #25
                      My legs do the same thing. When I lean back they will stick straight out for a few seconds then drop slowly to the floor. If I lean back real slow, then tense my hip flexors, I can get them to lift at that moment. If I try to stop them from dropping to the floor I can get them to hold in position for a very short time. If I wait a minute I can get them to stick out again. On the bright side, I have been able to fire my quads and hamstrings in different positions over a small range of motion. We use a portable weight stack with ankle cuffs. It is so much fun to be able to move that weight even though it is only a pound or so.
                      My quads are toned all night long. It is hard for me to bend them at the knee, pulling up with my hands, when they are straight out. I usually get help first thing in the morning so I can bend, stretch, and relax them.
                      Injured 7-22-06, T-11 T-12 complete. [Holds up cardboard sign] "Will work for returns."
                      2010 SCINet Clinical Trial Support Squad Member
                      Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

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                      • #26
                        After nearly two years of excessive tone my daughter was injected with botox. There has been a lot of controversy re this procedure. It is still too early to see the long term benefits, but, if she doesn't progress the effects wear off in three months. I have also heard that The Wave, The Power Plate or The Galileo, which are used by astronauts is suppose to really help w/ tone. The high vibrations also help prevent ostreoporsis...we hoping to buy one. A few gyms have them in the U.S. although I have heard that they are all over in Holland.

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                        • #27
                          my legs do alot of the same things. i can actually trigger spasms by flexing my ab muscles. when i lean back, my legs will shoot out for a while, if i lean forward, they calm down. thats not the bad part though. my more common spasms are my knees bouncing. basically my feet kick up and down randomly and my entire lap bounces, the best way to make these spasms stop is to lean forward onto my lap, but they usually start back up again. stupid calf muscles always wanting to bounce! ive always attributed these spasms to sensitive feet
                          T-10 complete, May 8th 2005(Mother's Day)
                          Cripple Pride!

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                          • #28
                            Originally posted by Thusa
                            my more common spasms are my knees bouncing. basically my feet kick up and down randomly and my entire lap bounces, the best way to make these spasms stop is to lean forward onto my lap, but they usually start back up again. stupid calf muscles always wanting to bounce! ive always attributed these spasms to sensitive feet
                            That's called "clonus" and it's a pain. I hate it so much when my body does it that when I see AB people sitting, tapping their feet, I want to reach over and make it stop.

                            i can actually trigger spasms by flexing my ab muscles. when i lean back, my legs will shoot out for a while
                            Have you tried standing? I was first able to stand by triggering those extensor spasms.

                            C.

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