Leg Pain

[jeff@zoom]

I would really like to hear from anyone who has pain similar to my own. This pain is always above knee level, usually behind the knee on the inside of the leg. I have to describe it as electrical. It feels like an electrical shock and is very intense; sometimes I scream out loud. At times I go 8 weeks without pain but when it hits it's always a whammy. I get zapped for about 4-5 seconds; relief for 1-2 minutes; then another zap etc. On and off like this, sometimes, for as long as 24 hours. I take 300 mg Gabapentin 3x a day.

[metronycguy]

what injury do you have?

[Rollin Rick]

I also have electrical lightning bolts shooting down my legs all the time. Even when I try moving my legs I get a zap. One good thing about it is I can tolerate it. Does this mean there's some type of connection??

[jeff@zoom]

Spinal cord injury, T-12/L-1

[metronycguy]

i have cauda equina, which is spinal roots with neuro pain in my left foot .surgeries were at l4/5/s1 plus stenosis, when i stretch my hamstring on my injured side i get shocks in my toes , the same place my neuro pain hits me when i am asleep. i get a lot of shocks, though lately hasn't been as bad, still enough to wake me up as soon as the pain meds wear off in 4 hours.

[QuadMedic]

Rick I have it also it's quit cool ..... what puzzels me is why can I randemaly and at my will invoke these sensations in all of my extremities ?

Originally posted by Rollin Rick:

I also have electrical lightning bolts shooting down my legs all the time. Even when I try moving my legs I get a zap. One good thing about it is I can tolerate it. Does this mean there's some type of connection??

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[firesmurf]

Hi Jeff, Just a quick question for ya.do you also have any type of a swelling or lump behind the knee that you would be able to feel by just palpating the area.Among other crappy things that I have going on inside my knee(RSD,brown sequard syn on the R side of my body,and some severe inflammation in that knee too)I was Dxed with what has become a bakers cyst in the same location that you just described.do you notice any swelling at the knee level?i have swelling but I am not certain as to what is really causing it as having the RSD there also causes swelling too.But the symptoms you described(which i know can also be caused by other things as well)are exactly what i have been feeling at this area for almost a year now.Just a thought.Marcia

[jeff@zoom]

reply to firesmurf: no, i have no swelling behind/around the knee. it's neuropathic and some people i know call it the "burnies" because of the burning sensation.

[NorthQuad]

I don't get it as intense now but when injury first happend it went right from my tits to my toes. It was horrible and I couldn't even sleep when it got bad. I still have it a bit especially when there is a loud bang or crack all of the sudden, as in sound. It's a very hard to explain wierd pain, I would also call it electrical. It sounds a little more painful for you since it is in one concentrated in one spot. When it hits me I also say a few words myself. It's nerve pain for me and it's so annoying and it takes everything I have to try to ignore it.

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[jeff@zoom]

Originally posted by Alberta Guy:

I don't get it as intense now but when injury first happend it went right from my tits to my toes. It was horrible and I couldn't even sleep when it got bad. I still have it a bit especially when there is a loud bang or crack all of the sudden, as in sound. It's a very hard to explain wierd pain, I would also call it electrical. It sounds a little more painful for you since it is in one concentrated in one spot. When it hits me I also say a few words myself. It's nerve pain for me and it's so annoying and it takes everything I have to try to ignore it.

My Dirt Bike Misses Me

[jeff@zoom]

For Alberta Guy: I can identify with loud noise bringing on the pain. When I see something that looks like it is painful, i.e. watching a football player take a painful hit, that too sends me a jolt but not the ongoing-forever kind I usually have. I, too, cannot sleep when the pain sets in. When I have it, it's the only thing I can think about. I can't block it out - it's too intense.

[QuadMedic]

Is there someone that can maybe explain how a visual or even a simple thought can evoke a sensation of "electrical" shocks through our bodies?

In my case, which I'm sure is not unique, the simple concentration on any extremity evokes these shock-waves in the specific extremity, which is strange for a "complete?" C3/6.

Dr. Young can you shed some light ... my field of medicine was Truama so ICD is easy but not this neuro stuff ...:-)

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[Jericho]

jeff@zoom-

I was very interested to come accross this post from you! I experience the EXACT same thing. An "electrical" kind of pain behind my knee on the inside of the leg etc. And the sensations come and go just like you described as well. It is very painful! My injury is T12-L1 as well. Initially I would just take over the counter pain killers as soon as it would start and that would generally take care of it. But it has gotten worse over time and my doctor has given me some Motrin 800MG. This too seemed to work pretty well for a while but just yesterday I spent 24 hours in pain and I am wondering if there is anything else that can be done.

I am not sure of your situation but I don't use a wheelchair. I walk with the assistance of leg braces and canes and I have found that putting weight through my leg and standing and walking tends to help a little bit. Also, it also helps to use ice and heat. Putting pressure directly on the area helps a little as well. However, none of this kept me from a day of pain yesterday!

[dejerine]

Like the others, the lancinating pains or lightning pains are random, very intense, and often seem related to leg position or movement. These pains came on rather strong in my face (where I have severe CP) after i tried to use TENS on the neck, but largely declined about two months after I stopped TENS. It is almost impossible not to jump or cry out when the bad ones hit but I have learned to suppress it. I have tiny fasciculations or ripples going all the time in the legs and I can see that the little lancinating pains often begin just as a fasciculation does. In my face, I could not see the ripples where the lightning pains came from, but I thought I could feel a bit of a tiny twitch. This makes me curious why. I have never read any explanation and I think if I did not have such prominent fasciculations in the leg some of the time, I would not have realied the connection. In me, these pains are helped by meds which quiet the CNS, and also by maintaining my legs in positions which cause them to be less frequent. Lightning pains are severe but it is just like getting stabbed a few times a day, which is much less to worry about than the constant chemical burn of dysesthesia, for me. They really hit, and can take my breath away, but I used to be in contact sports and so I think I am trained to ignore brief pains. It took about three years to stop jumping when it hit. I dont like it, but it doesn't make me a different person like the burning does. I used to worry that it meant things were worse or maybe better when the lancinating pains were worse or better, but over the years I haven't seen much connection. They are much more prominent for about a month or more after spine surgery, as if my cord is hyper and prone to explode into these lightning pains. It subsides back to baseline after a while. I guess they don't scare me like they used to. The bad thing I feared was coming never happened. The lancinating pains burn themselves out as if the nerves can only sustain these tremendous jolts for a series or two and then must ease for a period. I used to think they were a prelude to permanent spastic rigidity like some of my friends who have contracted limbs, but it hasn't happened. I will have them really bad for a week, and then they will be not so bad. Random, mostly. If you can not be scarred that they mean something terrible is upon you, it makes them easier to bear. When they did my cervical facet blocks they had a hard time pushing this needle into my neck and kept bending the needle. The radiologist kept expecting me to go white or pass out from the pain, but I told him I have stabbing pain all the time which is worse than that. It was one heck of a long needle and the pressure was enough to almost push my neck off the table, but I am not afraid of the pain. I am afraid they will mess up my cord worse. Fortunately everything went okay. 'The technician who was eating her lunch forgot she had already done it BEORE she ate her sandwich and accidentally did my CAT scan twice, but then hey, what is a couple more rads to the neck. I did get cheated on my gown however, but for only six thousand dollars why should I expect one that doesn't have the ties torn off. The guy next to me was young and good looking and very exposed, so that was my safety from my own exposure. During my recovery I managed to escape from the floor and wheel myself off to the library where they were giving away books. I got this wonderful, very old anatomy book on how orangutang brains differ from human brains. Hardly at all, it turns out. Orangutangs are the most like us, it is said. I am sure they were glad to donate their bodies to science to prove this, just like I was glad to donate my money to the hospital. It also had a picture of a white child raised by a gorilla, with the gorilla's arm around the child lovingly. I think this might be where the Tarzan idea began. I would post the picture in the Relationships forum, but it wasn't far out enough.

If you haven't been to the Relationships forum, that is where people write in and say "I have this high cervical lesion, am on a respirator, have no sensation whatever, my girlfriend left me for my physical therapist and my colostomy and catheter plug all the time. Do you think this means I might have sexual difficulties." They answer "Not really, no problem, nothing to worry about at all, unless you attempt a transfer, or a large moth lands on your thigh, in which case you will get an erection and autonomic dysfunction and life threatening high blood pressure and be so sweaty they will drop you on the floor." Not a very comforting forum, but they have cute pictures of Betheny there so it works.

[Jericho]

dejerine--

I am not sure I really understand your post although I think you for responding.

I was just very interested that there was someone else with the EXACT same pain sensation that I was having. I was just wondering if there was another better treatment that I could be using. I'm not exactly sure what is causing the pain. It could be nerve endings--I'm not sure, but it must be something to do with the level of our particular injury (t12-l1). Anyone have any suggestions? comments?

Thanks!

[rcechser]

I have the same thing and I am a T12 My Dr wants to put a pain implant in.Has anyone had this done if so did it work

[metronycguy]

I have the same thing and I am a T12 My Dr wants to put a pain implant in.Has anyone had this done if so did it work

i would think they would try medications first to see what the pain responds to..

i saw in this thread where jerico was taking motrin and that was working on his pain, i dont think motrin works on neuropathic pain, so the pain may be due to a mechanical or inflammation problem compressing a nerve.

i have spinal cord stimulator, but it doesnt work on the pain i get in my toes ,which now is my worse pain, every night and every time i lie down, i am finding out now that this pain even though its electric shocks and hacksawing of my toe joints, may be from stenosis, and spinal cord stim will not work on that pain.

my butt pain may not be from my back, it may be due to muscle loss on my butt and the sciatic nerve getting irritated due to sitting on it. tendon irritation can also cause swelling of the tendon and this swelling can press against the sciatic nerves and cause a pain syndrome that is confused with coming from the lumbar disc..

[onolan]

dig it,i am chronic t12/l1 incomplete have had pain that was standable for 20 of those years---it became so bad---shocking,lancing ,flaminf,stabing,puslsing events every 12-15 minutes got so bad ---all in my legs--at crescendo involved entire leg--sometimes both at same time--such that erventually i was placed on 120mg methadone daily---pain kept changing--added in neurontin--up to 900 mg/day---remainedi n this regime for 4 years---over the last 2 years very much tactile and some motor return---pain broke through max doses of both meds--realizing that the drugs did no longer touch the pain and noting that the pain has changed character such that an hour of heavy exercise twice a day seems to "manage" it i dropped the neurontin -and am almost clear of the methadone----i wish that i had been able to use canes n braces as i expect that would have minimized said pain all along--yep 35 yrs ago my sis said "no wonder you have this pain you sit in that chair for 16-18 hrs a day and even though you depress your legs are"asleep" " i know/knew she had something there---(an aside--the pain cranks up to 1hz and such an intensity as to be unbeleiveable--this happens when I have been exposed to a virus--lasts up to 12 hrs at worst--but i never get the cold or flu)----i wonde4r what a neurlogist would say bout all i have said--onolan
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