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If You're C1 C2 Quadriplegic Raise Your Hand




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#1 Texas Angel Ang

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Posted 24 March 2010 - 09:06 PM

As most of you know, I have a C1 C2 incomplete injury, I have noticed a lot more C1 C2 incomplete injuries on this site... so I have a few questions for you.

I have been working out my legs a lot more lately and I'm very surprised how much stronger they have gotten just within 2 weeks! I'm not even working out hard-core yet!

I have noticed an increase of sensation on my back, legs and feet. My legs actually have that "tingle" feeling all day now. My spasms have increased and at one time my bladder was going crazy. But that has stopped finally.

I'm now waking up or not sleeping at all (even with sleeping medication) due to severe pain at nighttime. Either a burning sensation or a cramp. I have been staying away from pain meds since the celebrities are dropping like flies! I'm also getting this weird feeling throughout my body at sporadic moments, the only way to describe it is it feels like a jolt of electricity (not that I have ever had an electric shock lol)

So just wondering if any of you have experienced this or any suggestions??
"Become your own roll model, your wheelchair is just another accessory in life" Me

#2 SpeedyBK

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Posted 25 March 2010 - 12:39 AM

ang i do get similar feelings i feel cold, and pressure on my legs. And i occasionally get those static shocks mostly down low and sometimes with AD. Feel free to ask me, anything whenever and I'm c1-2 complete.

#3 chickadee

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Posted 25 March 2010 - 01:07 AM

I'd be the first to admit I know noooooothing at all about C1-C2 quad life, but it sounds like me when I started working out my legs more aggressively than before, plus I'd gotten used to my dosage of baclofen. It seems like maybe starting this activity is triggering something in your body that takes awhile (or never) to calm down? I dunno, I'm simply musing here.

I know you don't like pain meds, my dear. But, if you're not already on baclofen (anti-spastic), you might want to talk to the doc for a script. Alternately, you may need to up the dose a bit due to the added activity or getting used to it, if you take it already. I had almost the same stuff going on, only lower, once I started really kicking my butt into gear. Especially the cramps and the no sleep.

I hope it helps, and it gets sorted out soon!
-S
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#4 spot

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Posted 25 March 2010 - 01:21 AM

Ang,

You've read my profile, so you know that I am a short-distance, wobbly walker, despite having a C1/C2 SCI. What I have to add, therefore, may not be relevant to your situation.

I have limited sensation, but have tingling and pain in all my nerves. Right now I am really cutting down on the gabapentin, so the pain is getting nasty. I feel frequent "electrical jolts" down my right leg, which is the one I usually can't feel at all. Tingling elsewhere, except in my hands, which feel like they are burnt. Most of my muscles are in a constant state of cramping; the back, neck and chest are the worst.

I am starting some serious physical therapy, which I never received earlier. I guess because I could sort-of walk, I was ignored. I was told it might be possible to make the back muscles relax a bit by strengthening the core muscles. I tell you, everything feels worse, now that I've started. (Tetracyclone said it would, so I have some hope all this will be worth it.) The physical therapist says the jolts are from peripheral nerves attempting to contact the brain, but failing. He said nothing more on the subject, so I gather he either didn't want to discourage me or he didn't know anything more.

I would suggest that what you are feeling is normal. What it means, I'm not sure. I wish I knew, so I could have more hope for myself. (I'm a bit selfish.)

#5 Texas Angel Ang

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Posted 25 March 2010 - 02:21 AM

I'd be the first to admit I know noooooothing at all about C1-C2 quad life, but it sounds like me when I started working out my legs more aggressively than before, plus I'd gotten used to my dosage of baclofen. It seems like maybe starting this activity is triggering something in your body that takes awhile (or never) to calm down? I dunno, I'm simply musing here.

I know you don't like pain meds, my dear. But, if you're not already on baclofen (anti-spastic), you might want to talk to the doc for a script. Alternately, you may need to up the dose a bit due to the added activity or getting used to it, if you take it already. I had almost the same stuff going on, only lower, once I started really kicking my butt into gear. Especially the cramps and the no sleep.

I hope it helps, and it gets sorted out soon!
-S

yeah I'm thinking the aggressive therapy (which I haven't even started yet lol) is triggering a lot of muscle memory. I used to be able to do a lot of things like take steps with assistance and so forth.

I do take diazepam... and I do take an extra one if the spasms are too much.

Ang,

You've read my profile, so you know that I am a short-distance, wobbly walker, despite having a C1/C2 SCI. What I have to add, therefore, may not be relevant to your situation.

I have limited sensation, but have tingling and pain in all my nerves. Right now I am really cutting down on the gabapentin, so the pain is getting nasty. I feel frequent "electrical jolts" down my right leg, which is the one I usually can't feel at all. Tingling elsewhere, except in my hands, which feel like they are burnt. Most of my muscles are in a constant state of cramping; the back, neck and chest are the worst.

I am starting some serious physical therapy, which I never received earlier. I guess because I could sort-of walk, I was ignored. I was told it might be possible to make the back muscles relax a bit by strengthening the core muscles. I tell you, everything feels worse, now that I've started. (Tetracyclone said it would, so I have some hope all this will be worth it.) The physical therapist says the jolts are from peripheral nerves attempting to contact the brain, but failing. He said nothing more on the subject, so I gather he either didn't want to discourage me or he didn't know anything more.

I would suggest that what you are feeling is normal. What it means, I'm not sure. I wish I knew, so I could have more hope for myself. (I'm a bit selfish.)

yes that is exactly what I'm feeling... especially the electric jolt! It scares me when it happens because so sporadic! Ugh... I wish they had more answers... I'm a bit selfish too.
"Become your own roll model, your wheelchair is just another accessory in life" Me

#6 In The Wind

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Posted 25 March 2010 - 01:47 PM

I'm a C5-7 but I can tell you that wnen I started therapy again, 8 years post, the burning has been so intense that I've had to stop the therapy as of 2 weeks ago. The burning seems to be common for those of us that try to use muscles affected by the injury, and according to everything I've been told since I was hurt it is related to nerve regeneration.

But dam it's painful for sure..

#7 Texas Angel Ang

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Posted 25 March 2010 - 07:30 PM

Yeah, from what I have been told in the past, any burning sensation is a good thing... nerve regeneration... awesome. However it hurts bad! I didn't workout yesterday and actually went to bed early and slept through the night!!
"Become your own roll model, your wheelchair is just another accessory in life" Me



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