any pain like this? please look

[marielea]

i have a horrible pain in my inner thigh/groin area. it feels like someone is taking a large knife, then stabs me in the leg and slowly takes it out. i'm no wuss, but this is about the worst pain i've ever felt. i'm about 2yrs post accident, and this started about 1yr ago. nothing i do relieves it. it doesn't matter what activities i'm doing, nothing helps or makes it worse.
it happens all day long and all night. some days aren't as bad as others. sometimes its a dull pain that lasts a few seconds, other times its a very sharp pain that lasts about 30 seconds. when the bad ones happen, it doubles me over, clenches my jaw, and makes me completely stop doing what i'm doing. i immediately put pressure on my legs, as more of a reflex. i'd like to think it helps, but it doesn't seem to matter at all.
i've taken so many drugs for this, but nothing seems to help. i'm on neurontin 4X a day, 600mg. sometimes, on the bad days, i take up to 10 extra (not at one time) to try to get rid of the pain. i've tried vicodin, tylenol, hydrocodone, tramadol, some others, and now a new one. nothing seems to help. i've also tried a heating pad to, nada.
the drs tell me its a nerve pain. i guess i've never challenged them to say that its a muscle pain, so i don't know.
nights like tonight, i've been up all night. i can't sleep b/c of the pain. it hurts too bad. i'm hoping that someone has had similar issues, and can help give me some advice....please!! :) i'm at my wits end. i tried to search in this forum, but haven't come up with anything like my pain. anyway, thanks for your help!

[quad79]

No suggestions, but I feel for ya.

[alan]

Among the other pains, I have stabbing pains in various places. I haven't found anything that works on them, or on any of the sensations. I hope you have better luck.

[adi chicago]

sorry to hear mariela i`ve tried many pain meds ...nada ...good luck ....
i hate pain as well.
ps.dont laugh please ...after 7-8 beers i sleep for few hrs and the pain level is ok.from 10 to 8....
is called alcholic anasthesia....

[sjean423]

My nerve pain is different than this, but some people find Lyrica works better than Neurontin.

[David Berg]

This sounds like you might be describing what some call "lightening pains" with a strong, almost electrical, shooting sensation. If that's what it is, they can be notoriously difficult to treat.

If it's more like the pain is within the muscle, I've heard of some people having a little luck by applying deep pressure, such as pressing into the muscle with a thumb, to stretch the muscle spindle (the nerve inside the muscle).

Have you tried TENS to lower the intensity?

BTW, have you had a nerve conduction study to see if they can pin down what's happening?

[Danine]

Mariel, I'm sorry to hear about your pain. I had pain like you're describing while in rehab (I'm 14 months post-injury). It was so bad that I'd double over on the PT table and cry in the gym. It was often accompanied by a fiery feeling from the right side of my groin down into my right leg and foot. I still have that damn burning/pins and needles/cold, hot, and wet feeling most all the time...yes, hard to describe. Fortunately, Neurontin took the edge off of this for me. I still have the pain but it is not nearly as intense as it used to be. I hope you can find some relief soon. I know it's hard to deal with.

[Lazlo]

Danine - "wet feeling" that's a good way to describe it, like you're wearing jeans soaked in acid? Actually the pain seems worse when I'm wearing pants instead of shorts, even though I can't really feel my legs, weird.

Marielea, do the pains coincide with spasms? How much real sensation do you have in the area?

[metronycguy]

i have the lightning electrocution pains too, been dealing with if for over 7 years now.
wish i could find med that works well, i m on lyric 300 Day, i here tegetrol is worth try.
i malso on oxyconton and was using opana for bt pin.
i just started with fentora the lst 3 dys.it hasnt worked as expected. it is barely working, dont even feel it

[David Berg]

After reading your post again I want to pitch in a couple more thoughts. First of all, until relatively recently doctors generally didn't acknowledge that neuropathic pain could be felt in the muscles themselves. It can and that's the type muscle pain I referred to in my earlier response. The muscle spindle nerve seems vulnerable to this sort of thing, even if it isn't the most common symptom. Of course, there are still many doctors who are unfamiliar with this manifestation of neuro pain.

It is very common for people using Neurontin for neuropathic pain to have to go with a higher dose that the 600 you're taking. Also, you should be aware that when the generic versions first appeared many people reported that the noticed a huge difference in effectiveness. Awhile back I started a thread to discuss this difference. You may want to review the information in that discussion at http://sci.rutgers.edu/forum/showthread.php?t=95293

[fishin'guy]

Marie, sorry bout the pain, alot of us been there, I've had them. Went to er room the first 3 times, then realized " this is what they meant about pain management" in the yes you can book. My rheumatologist really helped me with this. He knew a world more about pain control and meds than my sci dr. I take morphine 15 mg 2x day, when one of these pains hit, he explained that morph. is for nerve pain only, doesn't help aches and soreness. So I take 30 mg of the morph, and then he said to add .25 - .5 mg of xanax, as that is very good accompaniment to the morph. I also did switch to Lyrica 2 yrs ago. My shooting nerve pains like that usually only last about 24-30 hrs. But with above drug usage, they quiet down in 45min- 1 hr. Hope the best for you.

[David Berg]

My rheumatologist really helped me with this. He knew a world more about pain control and meds than my sci dr.
This is not the first time I've heard this. I have heard of people with neuro pain from strokes and other conditions finding rheumatologists that were more skilled at dealing with the symptoms than anyone else they could find. Physiatrists are another good specialty for this sort of thing, as well.

[marielea]

thanks for the replies.
i don't have muscle spasms, that i'm aware of. i've only seen them 1 time, on a friend of mine. his whole leg would shake. i'm assuming those were muscle spasms, and thank heavens, i don't have those. just the stabbing pain that i described-which is enough for me! i'll talk to my dr about the pain meds that you guys have described. i sure hope something works.

[DaleB]

sorry about your pain.

i have a very very similiar pain in the same area. we are similar in other ways as well - both t12-l1 ~2 years post. it comes out of no where and feels like an ice pick suddenly stabbed down into my right inner thigh, then slooowly fading over 10-30seconds. it consumes me 100% it is so intense. the entire world fades away until it is gone.

when i noticed that pushing down on my hip bone made it worse, my PT said it was likely 'neuromuscular'. i thought that was a pretty generic term but then she said to try tighening my hip muscles as best i can on that side when it starts. i thought she was crazy but it does work. it's like an on/off switch. as soon as the stab happens i tense up at the hip as hard as i can it and stops. if i relax too soon it comes right back but if i hold it for10-15 seconds then relax it stays gone.

i know spinal cord injuries are like snowflakes - everyone is unique.

good luck!

[justadildo]

welcome to the darkside of sci.....the pain that NO ONE will ever understand unless they have it.....

[esseecole3@bellsouth.net]

So sorry to hear of your pain. I have fibromyalgia and often I have shooting, stabbing, numbing pain in various parts of my body. Most recently, it has been in the right side of my face. The pain travels along the cheek, brow & jaw bone. I have been to the ER over it 4 times. They give me a shot & sent me home. The neurologist did the shocking tests on my face. On the left side he finished quickly, on the right side he just kept shocking me until he got the reading he was looking for. I finally told him if he continued someone was going to get hit. He diagnosed me with "atypical pain". I asked what the hell that was & he said,"Pain we can't explain." I said, "Isn't that what fibromyalgia is?" He increased my Lyrica to 150mg 3x/day. It worked for a while, but, if I talk alot the pain comes back & is worse than before. I also have those same pains in my lower back. The last two times it disabled me & I couldn't walk at all. I went to the ER & they gave me a shot of morphine & sent me home. The most recent episode was 3 weeks ago & I was unable to walk for a week. I often think the dr.s just don't know what to do & guess at treatments and sometimes I think they think that I am lying.:mad:

[marielea]

i guess my regular sci doctor is out of ideas. he put me on a new drug, dilantin, about 2wks ago. its not doing crap. this is on top of the tylenol, and all the neurontin-plus the hydrocodone. now i have to go see the 'pain management team' at the med center. i was there once before, and it didn't work out very well. i just need this pain to stop. its even hard to drive when one of the 'big ones' hit. i just can't do this forever. there has to be SOMETHING out there for cripes sakes. thanks for all your help...i'll let you know what the pain guy says.

[jccarolina]

My name is Andrew I'm a l-1 also from a gunshot (9mm) two yrs ago and i know exactly what your going through the lyrica and neurotin doesn't work i smoke hellva lot of weed which seems to help with the annoyin pain but when the big one hits it only lets me go into my special place till it passes i only see one way out, and i pray for god to take me so i don't have to do it. I feel like i'm living in hell i wish i could tell you what you what to hear like I know a cure lol but i don't and the gov't is b.s. ing on the stem cell research if bush's daughter was going through what we do we would have the answer already! I haven't heard nothing about it from mcain or obama so i'm not voting. But try smoking a joint you might be suprised. drinking alclohol seems to make it worse on top of a hangover so i don't drink.

[woman from Europe]

I get pain like that if I am not stretching twice a week by a physical therapist

[jccarolina]

My name is Andrew I'm a l-1 also from a gunshot (9mm) two yrs ago and i know exactly what your going through the lyrica and neurotin doesn't work i smoke hellva lot of weed which seems to help with the annoyin pain but when the big one hits it only lets me go into my special place till it passes i only see one way out, and i pray for god to take me so i don't have to do it. I feel like i'm living in hell i wish i could tell you what you what to hear like I know a cure lol but i don't and the gov't is b.s. ing on the stem cell research if bush's daughter was going through what we do we would have the answer already! I haven't heard nothing about it from mcain or obama so i'm not voting. But try smoking a joint you might be suprised. drinking alclohol seems to make it worse on top of a hangover so i don't drink.
Hey guys, meet my best friend Andrew,
I've been tryin to get him to join here and post ans ask questions so if I tend to sound like I'm possesed you'll know why, LOL. It's just Andrew just using my profile. I say if using mine is easier to come and get support then I'm all for it. I'll try to help him get a profile torgther sometime :p

[Regine]

Welcome, Andrew. I hope you find some support here. I am fairly new here myself and find it very helpful to see I'm not the only one having to go through this pain on top of the paralysis.

[andreas81]

i am sorry to hear about ur pains...i have also pains but its very difficult to explain them.the only thing that i can tell u is that my pains appear also one year after my accident...i dont take any drugs about them because i believe that GOD know better...the only thing that i do is to put them at the back of my mind and continue my life.
...STAY STRONG AND I WISH U THE BEST...