16 replies to this topic

[ljj]

I'm a T4 incomplete and about 1 1/2 years post injury. I've always felt tingles down my legs into my toes. But in the last three months, the tingles have turned into a squeezing, burning pain. It's kind of a combination of when your leg goes to sleep and starts to wake up and a blood pressure cuff being squeezed too tight. But the weird thing is that it's every other day. On a good it's tingles, on a bad day it's the squeezing, burning. I had a pressure sore on my hip that had a bone infection and it keeps coming back. The doctors think the pain is caused by that, but if that were the case it would hurt all time. I'm on antibiotics and pain pills, but nothing helps. The thought of spending the rest of my life in pain everyother day is not appealing.

Any words of wisdom?

Laura

[pinkcloud]

Hi

No words of wisdom yet I am sorry but I have the same trouble. I am sill under doctors care so I'll keep you posted. It also feels as though I am walking in 'the sand at the beach' when I get pain in the scar area in my back too.

I am on lyrica and this dosnt stop it for me either. Sometimes sensations that are horrid can bring me to my knees as much as pain does.

Your not alone in this and I hope this brings you some comfort

[BalancedInteger]

Hi Laura!

I'd recommend talking to a neurologist about this issue. I'm not a doctor, and I don't even play one on t.v., but it sounds like you could have developed peripheral neuropathy.

I've been dealing with that for the past four years. It started off as a constant low-intensity burning in my feet. Now it varies from that low-intensity burning to a feeling like someone is holding a blowtorch to my feet, constantly interspersed with electric shocks. Recently the sensations have spread up the back of my thighs and knees.

From what I've read, this is a common occurrence for people with SCIs. I take Lyrica and vicodin to control my neuropathy. A neurologist can probably help you out with a proper course of treatment.

[ljj]

From what I can tell, everyone who has this pain also has an incomplete injury. Do you know if this is true?

Laura

Edited by ljj, 31 August 2010 - 01:56 PM.

[allis53ca]

Laura, not "incomplete" but crushed cord vs severed cord....this central nerve pain club is one that every member of wishes to be kicked out of....my recent wound/bone infec has made my c/p unbearable too...theres no common way to manage the pain, we need to each find our own individual regiment....

[ljj]

You're right about wanting out of this club. THey put me on Gabbapenton (sp?) today and I'm supposed to keep a pain dairy and go back in in two weeks. Hopefully within the next couple of months we'll find the magic mix.

Thanks and Good Luck.

Laura

[allis53ca]

noooooooooooooo!....gabb is shit and will tard you too much to write in diary...pain diaries are for ab's, too many variables environmental and otherwise...try lyrica 1st...adjust dose +/- to side effects, then back off by 50m increments......

[pinkcloud]

allis53ca, on 01 September 2010 - 07:41 PM, said:

noooooooooooooo!....gabb is shit and will tard you too much to write in diary...pain diaries are for ab's, too many variables environmental and otherwise...try lyrica 1st...adjust dose +/- to side effects, then back off by 50m increments......

I totally agree - was on gabapentin and I nearly poked me eye out every time put on me mascara and made me puke up acid reflux. Its nasty = thats why they say go on lyrica - its them same family of drugs but less side effects.

But I am a lyrica fan so I am biased

[mellowgator]

pinkcloud, on 01 September 2010 - 08:13 PM, said:

allis53ca, on 01 September 2010 - 07:41 PM, said:

noooooooooooooo!....gabb is shit and will tard you too much to write in diary...pain diaries are for ab's, too many variables environmental and otherwise...try lyrica 1st...adjust dose +/- to side effects, then back off by 50m increments......

I totally agree - was on gabapentin and I nearly poked me eye out every time put on me mascara and made me puke up acid reflux. Its nasty = thats why they say go on lyrica - its them same family of drugs but less side effects.

But I am a lyrica fan so I am biased

funny i have the opposite experience. the lyrica side effects get me everytime. neurontin seems to help but not always. i have quite a varity of meds. mobic, oxycoton, neurotin, lyrica, valium. if i'm having a really bad day i just make a drug cocktail and usually i'm good.

mellowgator

[ljj]

Well, This is day number two on the Gabapenton and no side effects so far. Today, the pain is there but it's not overpowering. I'm on VA medical so there's some drugs they won't do, but hopefully I'll get a mix that will work. Thanks to all for your help.

Laura

[pinkcloud]

funny i have the opposite experience. the lyrica side effects get me everytime. neurontin seems to help but not always. i have quite a varity of meds. mobic, oxycoton, neurotin, lyrica, valium. if i'm having a really bad day i just make a drug cocktail and usually i'm good.

mellowgator
[/quote]

oh no I am sorry to hear it dosnt agree with you. I am still at a very early part of my recovery and live quite a sedate live. I know if I go out for the day I am completly battered. No way could I work yet :-(

I think that a cocktail of drugs for bad days may be needed if I want a fuller life.

How does valium work? does it calm the muscle spasms? I want to be as less drugged up as I can if possible. I could be pain free in 18 months time I am told. So I may hold out til then. If not, by then I will have had enough of braving it out alone outside of medication world

[quote name='ljj' timestamp='1283374394' post='180769']
Well, This is day number two on the Gabapenton and no side effects so far. Today, the pain is there but it's not overpowering. I'm on VA medical so there's some drugs they won't do, but hopefully I'll get a mix that will work. Thanks to all for your help.

Laura
[/quote]

I'm not sure what VA medical means Laura am sorry. I am glad you are not having any side effects and the pain is a little less harsh. Maybe you can up the level if it suits you , thats what I did with lyrica. I took it easy.

Great to hear some good news

[ljj]

Well, yesterday I spoke too soon. About 2pm it started getting worse and by 5 it was really bad. I've increased the Gabapenton today but I'm waiting till this afternoon to see if the pain level increases. Va medical means all my treatments are throught the VA hospital. I go back in in two weeks for a follow up so if the pain is still there I'll ask for Lyrica.

[BalancedInteger]

I, too, took gabapentin first to treat my neuropathy. As others have reported here, it works some days but I had many more instances of breakthrough pain while I was on it. It also didn't agree with my kidney disease. It built up in my system to the point that I was falling into comas every weekend for several months before they figured out why it was happening.

Lyrica is much better. It makes me drowsy, but after a nap I'm good to go.

And thank you allis53ca! The crushed cord vs. severed cord remark you made was a revelation. My cord was crushed, resulting in an incomplete injury. Nice to have at least some idea of why this neuropathy developed, even if it did so so many years post injury.

[allis53ca]

i prob have no s/e from lyrica because i take no other meds to eff w/it...you guys mix/match narcs have too many chems in you to ever know if "one" works, because too many counteract each other

[pinkcloud]

allis53ca, on 02 September 2010 - 07:39 PM, said:

i prob have no s/e from lyrica because i take no other meds to eff w/it...you guys mix/match narcs have too many chems in you to ever know if "one" works, because too many counteract each other

allis53ca I think you are probably right, when I tried Gabapentin I was on Morphine, Tramadol, Codeine, steroids, other drugs I didnt even ask names of as I was too scared...............

Just yrica and diclofenac no troubles. Good advice. Makes me re-think taking cocktails again. Thanks for that reminder

[pinkcloud]

ljj, on 02 September 2010 - 03:52 PM, said:

Well, yesterday I spoke too soon. About 2pm it started getting worse and by 5 it was really bad. I've increased the Gabapenton today but I'm waiting till this afternoon to see if the pain level increases. Va medical means all my treatments are throught the VA hospital. I go back in in two weeks for a follow up so if the pain is still there I'll ask for Lyrica.

Hi Ljj
Is that the kind of hospital where there is no insurance? I am english do dont really understand. Lyrica may take a few weeks to get over the 'feeling slightly out it/dizzy' etc but that reduces once you learn to tolerate it. If you get a tight band pain, it gets rid of it to a huge degree - if you dont get that, I'll explain that this is one of the worst kinds of pains a t7/8 can get. Soooooo hopefully if will work on yours too. Worth a try I hope?

Keep us posted

[ljj]

No problem. VA is the veterans affairs. It's for all those who have been in the military. Specifically, I go to the SCI portion of the hospital. The doctors there are really good. This pain is relatively new, so we're just begining to figure out what works. The Gabapenton doesn't seem to be working but my next appointment isn't for another week and a half. I'll ask for Lyrica.