[jjbeck]

I am a C-4/C-5 quad, 9 years post injury. This is my 2nd post. From the beginning I've had some sort of leg pain. Some decribe it as pins and needles and others describe it as "burning". I've tried everything from a nerve stimulator to a morphine pain pump to a mixture of narcotics, nothing helps for long. Here's my question - has anyone had any luck calming this beast down? Help!

[Tetracyclone]

No. Occasionally it calms down by itself during the wee hours. The more I do, the worse it is. Mostly I ignore it, but sometimes I have lay down because it makes my mind crazy. Call myself the Pin cushion.

[wheeliebear75]

I've got nerve issues with my lower 1/2 & I wouldn't say I've found anything to "make it go away"........but I've found some tricks that help keep it at bay. Just keeping my mind as busy as I can & not letting pain go unattended to.......it'll just be harder to treat later. ;) And I usually find myself staying up til the wee hrs of the AM til things settle down enough for the Rx to allow me to sleep.

[jjbeck]

Pwuff, on Dec 31 2009, 08:27 PM, said:

No. Occasionally it calms down by itself during the wee hours. The more I do, the worse it is. Mostly I ignore it, but sometimes I have lay down because it makes my mind crazy. Call myself the Pin cushion.

thanks, me to

[jjbeck]

wheeliebear75, on Dec 31 2009, 08:41 PM, said:

I've got nerve issues with my lower 1/2 & I wouldn't say I've found anything to "make it go away"........but I've found some tricks that help keep it at bay. Just keeping my mind as busy as I can & not letting pain go unattended to.......it'll just be harder to treat later. ;) And I usually find myself staying up til the wee hrs of the AM til things settle down enough for the Rx to allow me to sleep.

Thanks for your help. I love your quotes!
jim

[allis53ca]

distraction is all thats ever worked for me

[edlee]

The Gabapentin takes the edge off,,, the rest is up to me. It is important to keep your ( drug of choice here) levels constant. I sometimes forget to take my morning doses when I get up,,, takes a couple days to get back what level of relief I call normal.
ed

[Oldsparkie]

I must be one of the "lucky" ones by the sound of it, I have felt nothing in my legs whatsoever since that fateful fall ten years ago. Maybe the fact that my cord was almost severed did the trick. However the pain at my lesion (T8) is unbearable at times and I hate swallowing heaps of painkillers. Any bright ideas?

[gsp23]

I used to take Neurontin (Gabapentin) for a couple years and it made me tired. Finally got to the point and from a C5 friend suggestion asked my dr about Lyrica. As I was on a very high dosage of Neurontin my insurance quickly approved the Lyrica. While I still do get some numbness and burning it is a tolerable level when taking Lyrica and it doesnt make me tired. I take Lyrica 3x a day and then at night I take several Baclofen to help me sleep since the pain is always worse at night.

I had spoken with my neurologist about this and was telling him that I thought maybe my whirlpool would help with the pain but it didnt seem to. He explained to me that the pain is a result of inflamation sometimes and actually submersing yourself in cold water will help with the pain, which actually seems to work sometimes too and is even better if you cant feel sensation from the outside but only the nerve pain. In addition to the all over nerve pain in my back and legs, I sometimes will get shooting pain in my thigh on one side and use a compression sleeve or ace bandage to wrap it tight which helps if the extra pain is isolated like that.

[puddels]

I'm wondering the same thing "will it ever go away or dull down". I never had this pain till I quit smoking 11 months ago..........sure makes me think of starting again!

This post has been edited by puddels: 02 January 2010 - 11:27 PM

[edlee]

For me, it's gone up a notch every year. I don't want to think about five more years from now.
ed

[jjbeck]

edlee, on Jan 3 2010, 02:39 PM, said:

For me, it's gone up a notch every year. I don't want to think about five more years from now.
ed

Ed,

Thanks for replying. I recently started a regiment of 75 mg of Lyrica and 400 mg of Gabapentin 3x a day. So far this seems to be helping. I tried Gabapentin a few years ago but never w/Lyrica.
thanks jim

[edlee]

I didn't know they would prescribe them both together like that,,,, might have to see if my doctor will do that for me.
Thanks Jim
ed

[jjbeck]

edlee, on Jan 5 2010, 06:16 PM, said:

I didn't know they would prescribe them both together like that,,,, might have to see if my doctor will do that for me.
Thanks Jim
ed

Ed, Let me know what your Dr. says. So far this is the best I've felt in years!
Jim

[adam_downunder]

edlee, on Jan 2 2010, 10:15 AM, said:

The Gabapentin takes the edge off,,, the rest is up to me. It is important to keep your ( drug of choice here) levels constant. I sometimes forget to take my morning doses when I get up,,, takes a couple days to get back what level of relief I call normal.
ed

That is so true... if you play around with the dose levels or miss one or two it takes a little while to build it up again in your system.

I find it helps a lot, but I still do have good and bad days.

[gsp23]

Yeah I have to say though that on Neurontin (Gabapentin) I didnt notice an occasional missed dose or late dose as much as Lyrica. Lyrica has a half life of 6 hrs and doesnt stay your bloodstream the same as Gabapentin. But the upside to Lyrica is that if you have increased pain any time then you can take an extra Lyrica or take your next dose a bit early and you can start to feel relief within about 30 min where as Gabapentin, does not work the same way. I actually have my Dr prescribe Lyrica in 100mg capsuls as well (my normal doesage is 300mg) so that when I do have increased pain I can take one of the 100mg ones and just stay on my same schedule for the 300mg.

[slyd]

adam_downunder, on Jan 6 2010, 10:43 AM, said:

edlee, on Jan 2 2010, 10:15 AM, said:

The Gabapentin takes the edge off,,, the rest is up to me.
ed

Hi all ....

My little piece of 14 years experience . . . . . WITH DRUGS (now i've got ur attention!)

In my early stages of para, I was given Lioresal (Baclofen) for pain and spasm, but being "incomplete", this made whatever limited movement I did have, too difficult. If I had stuck on Baclofen, I would be in a wheelchair "full-time now" as it is a major CNS depressant (for me), and I could'nt move while on it! I would've given up! I "canned the Baclofen" and lived with the spasms and pain, only taking plenty sleeping tabs at night to get some rest. One Neuro prescribed Dantrium (Dantrolene), with similar results (and the hepatic side-effects scared the shyte out of me!).

Moving along many years, after HUGE amounts of Imovane and generics (sleeping tabs), I was prescribed Neurontin (Gabapentin) AND Rivotril (clonazepam - also an anti-epilepsy drug, as is Lyrica) together.
OMG I now have a LIFE!

Control is the Key!
I take 100 mg Gabapentin in the AM- and 1-2 hours before bed I take 200mg Gabapentin AND 2mg Clonazepam. On a normal day, this will get me through. (I might need to up the Gabapentin at times when the spasms freak me out), but they do the trick! (The point of this dialogue is that my original prescription for these drugs was 400 mg Gabapentin 3 x day, AND 4mg Clonazepam 3 x day! I've worked my original "non-recreational" drug need down by more than 80% !)

Find your own balance with the drugs available - don't just take something cos they say so - you have your own tolerance . . . try to find it!

My wife is the best drug I have

I hope you all find peace within your body *

[Scooby Gimp]

I always call my nerve pain "The fire balls" because each time spasm, it feels like my lower body is on fire. Cannabis is the only thing I can find that relieves the pain. The burning always returns upon waking, in my case. A small toke or two helps loosen me up and gives me nice loose spaghetti legs so I can transfer more easily. I'm lobbying for a change in federal marijuana laws.

Scooby,

This post has been edited by Scooby Gimp: 21 February 2010 - 12:04 AM