6 replies to this topic

[tason]

I'm a 28 y/o male. Severed my spinal cord in a fall which fractured my T9/T10 vert. Paraplegic. My injury was in Oct of this past year and I have been home from the hospital for about a month. I had "neuropathic" pain or whatever it is beginning in the hospital. My butt would feel like it was frozen in a block of ice and my waist felt like it was being squeezed extremely tight with a belt. Doctor put me on Neurontin 100mg, 4 times/day. Progressively my pain would go away a little then would amp up more and he would up my neurontin. I went from 100 to 300 to 600 and now finally 900 mg, 4 times/day. The Neurontin seems to do nothing any more and my pain is terrible now. Oddly though it a day by day occurence. If I wake in the morning with the pain then I will have it all day. If I wake without though I will not have it at all that day. It almost never kicks in or out in the middle of a day. I would say I have pain 5 out of 7 days a week now. When I do now it feels like my entire lower body is frozen in ice and weighs a ton. Or it feels like I am on fire and my lower body begins to sweat as it normally doesn't. Doctor says I am almost maxed out on Neurontin and my next step is Lyrica. So any of you think Lyrica might help even though neurontin seems not to. Also the only narcotic I take is Darvocet and I only take that for my real pain where my surgery was. I take Baclofen for spasms but I take nothing but the Neurontin for this neuro pain. Are there other drugs you may suggest or other therapies eg. (acupuncture, massage, nerve blocks, etc.... ) that any of you have had luck with. I appreciate all your help. This pain is devastating to me. I have come to terms with being paralyzed and I just want to start learning to live my "new" life and now I spend 4 or 5 days a week unable to get out of bed. All I want to do is sleep (when I can) and I just wish the day away and hope the next is one of my "good" days. Even my "good" days consist of this pain it is just not so severe that I am bedridden. Sorry so long and thanks for listening.

[Trinity]

Lyrica is definitely worth ago, I had huge problems with gabapentin and swapped onto lyrica, it has helped a lot. Maybe also talk to your doctor about amitriptyline or nortriptyline, both of these are antidepressant drugs but have a proven benefit with neuro pain and can be taken on top of lyrica.

As far as other therapies go I must admit i haven't tried much. Massage doesn't help the painbut it doesn't make it worse. I find that a heat pack helps a little.

Good luck

[longhaul]

Hi, I'm T-6-7 , 1976. At the start I tried it all I was obsessed with getting the pain to stop but wouldn't. The pain is in your head literally and the reason why is that the brain does a search of the body every couple of seconds to make sure that everything is OK but when it sends a signal to the area below the injury it doesn't get a response so it sends the conscious brain a message that something is wrong and the conscious brain freaks out and thinks something is hurt so it makes up the sensation, hot, cold, pain etc. I gave up on the pain killers and booze when my liver started to go plus they did nothing for my mental state. Acupuncture works for some I had good luck with it, meditation is worth look try them all see what helps. I wouldn't mess with nerve blocks you already have one hell of a nerve block now. Getting the brain to stop telling you that there is pain is a mind game it's something you have to overcome by telling the brain that there is no pain. The brain gets the broken signal all the time so it's always there like back ground noise. A pain management person not a pill pusher would be worth a try. Good luck

[LuckyinKentucky]

Longhauls post may seem over the top to you right now, but it holds a lot of truth. I wouldn't say that it is all in your head but your head is certainly in all of it! I have pretty bad neuro's as well. I tried about every nerve pill under the sun and while some helped more than others I would have to take such a dose that while helping the pain it would mangle my brain. So to the disgust of the Doc's I quit all pills like 2 years ago. The first month was horrendous.. But before long i started noticing that while my pain seemed more intense there was also more things i could do to affect it. (moving around, changing positions, applying pressure) all these things would now change the sensation. The thing that i found that helped the most though is what I believe Longhaul is referring to.... not giving the pain as much attention by trying to put it in the back corner of your mind. I do this by trying to divert my attention elsewhere... especially when the pain comes. And if the pain is too great and forces what you are doing out of your mind then as soon as you can get back to what your doing and force the pain back into the background... right now this may seem a little "out there" but to give you a taste you can try the cold water experiment (though I don't know if it will work with the mask of neurontin your wearing). What you do is have a glass of ice water next to you and when the pain comes take a big ol swig of it while trying to focus on the coldness of the water. Try to completely fixate on the cool sensation and if you do than you may force all the other signals that are coming into your brain to the background.

[edlee]

I guess I will chime in here, too.....While I am still taking gabapentin, I still have the pain you describe,,,,, and it did seem that the drug worked for a while then didn't until it was increased.

I went thru that cycle a few times till I realized that it didn't really matter how high the dose,,, the pain was here to stay. I still take it, as I believe it does "take the edge off" a little, but don't bother to have it upped anymore.

As lucky and longhaul have said,,,, it is a matter of playing mindgames with yourself. You will find that,,,, if there is something that you enjoy doing,,, or something that holds your interest well,,,, while you are involved in it you forget about the pain ,,,, for a while.

If you are one of the many of us with this pain,,,, and there are a lot of us,,,,, it isn't going away.....Mask it with whatever works for you,,,, but it's there nonetheless,,, waiting for you to come to terms with it. Sure ,, it hurts,,, but get up out of bed and get on with your life, anyway.

Sorry if it sounds like I'm dismissing your problem,,,, I'm not,,, It's simply that I found it hurts the same up or down,, and I prefer up.

It hurt like hell while I was on stand, but whenever a deer came in view,,,, or even a chipmunk or squirrel,,,,, I didn't feel it.

You can't control the thing,,, but you can control your reaction to it,,,,,just don't let it control you.

You can do this!
ed

[tason]

Thanks for all the information guys and gals. I just saw my doc the day after christmas. He said I should start taking Lyrica (150 a day) in addition to the 3600 mg a day of Neurontin. The first day I had no pain and it was a wonderful day. The second day the pain set in a little but was mild and completely tolerable. The third day it got worse. Now on the fourh day and it was terrible again. Seeing him today per his request at last visit. He says we can still try boosting the Lyrica as well. He also says even though they are techically the same drug by same maker they are safe to take together. He has been dealing with spinal cord injuries solely for 26 years so I guess I will trust him. What other choice do I have. The meds do not affect me mentally but I have also been on anxiety/depression meds for 7 years prior to my injury so maybe I have just grown accustomed to mental impairment by now ! LOL ! I do respect the advice about just dealing with the pain and giving up the meds but as my injury was so recent I want to try anything I can before hanging up the towel and accepting the pain. I have been trying to just deal with the pain and move on whenever I can despite it but some days that is very hard to do. I have been using the advice about diverting my thoughts elsewhere other than the pain and it does help. But it's hard to keep that pain from moving back in. I will keep you all posted about how these med increases and changes go and hopefully my doc knows what he's doing keeping me on both meds. Thanks again and wish you all a good day !

[araitn]

Hey Tason, I can really relate to your pain problems as we have a similar injury level and pain involvement. I was injured in October of 2007 and have tried every medication my physiatrist knows of, without any pain relief. I got hooked on oxcycontin because we kept increasing the dosage hoping that it would eventually provide some relief, but it never did and coming off of it was a real bitch. Other narcotics also failed to provide any results.

I have a constant burning, stabbing, stinging pain in my entire left leg. I have the same pain in my right leg from my knee down and in my butt. The pain is more intense in my feet. They usually feel like they are sitting in ice water and my toenails feel like they have been ripped off. That's the constant pain. In addition, most days I have a shooting pain in my left sacrum area that runs all the way down to my left big toe. This shooting pain also happens in my left thigh. Sometimes the pain is so intense that I will scream and cry. Yeah, real men can cry!

Anyway, I have been taking Neurontin for about a year with a maximum dosage of 600mg x 5 and never did get any pain relief. Finally, I decided to quit taking it and slowly worked my way off of it with some minimal withdrawal symptoms. Then, I started taking Lyrica. Original dosage was 75mg once a day for five days with no results, added an extra 75 mg (total 150mg) for five days and no results, added an extra 75 mg (total 225mg) for the last four days and no pain relief so far. Per doctor's orders I'll add an additional 75mg (total 300mg) in a couple of days and see how that works until I pay my doc a visit next week. As nothing else has worked, I just don't put much hope in Lyrica doing me any good, but it's worth a shot.

As far as mixing Neurontin and Lyrica, my doc didn't suggest that, but your's might know better since he has a lot more experience than mine. There's just not any doc's in my area that deal much with SCI. I'm hoping to be able to go to a SCI rehab center in a larger city a couple of hours away to see if they can help with the pain and also with other issues I'm having (mostly bowel and bladder problems).

As far as other posters saying that this pain is all in your head, I just don't buy it. I've always been strong minded and independent and I'm not going to let something like this get me down and I know that this pain is not just "in my head". I don't believe that since your brain can't get a response back from below your injury level and thinks something is wrong, that it makes up the pain. This probably holds some truth if the made-up pain is above your injury sight, but how can the brain make up pain below your injury sight if it can't receive or get a message below the injury level?

I do believe and have been successful in trying to distract myself from the pain by focusing on other things. If I can get interested in a good read, a good tv show, or just anything that will keep my attention it does help to reduce the pain, but never totally eliminates it. I've always been an active, outdoors type of guy and I refuse to stay in bed all of the time, but, like you, there are some days that the pain is so unbearable no matter what I do, that I have to lay down sometimes for several hours before I can resume my day.

So, you're not alone in this and I hope you can find something that works for you. Keep us posted and hang in there!