11 replies to this topic

[Radar]

Hi,

In the last 9 years, I noticed that my Neuropathic pain has migrated up from my lower extremities toward my SCI site. It is about 60% of the way there so at a constant rate in about another 6 years it might reach the actual SCI area. The last part of the migration has me worried the most as where am I supposed to sit?

Specifically, the pain started in the R. knee (L3 or 4?). I am an incomplete L1 with very spotty, and intermittent sensation right down to my shin bone on one leg and calf on the other. I can definitely feel slight pressure or touch at times but the Drs do not say anything one way or the other. Probably since they are addressing my other immediate and more pressing issues. I personally think this migrating observation is related to the other problems in one way or another.
Has anyone had the unfortunate experience of having pain migrate slowly up?

My apologies to the complete quads and paras that would give their right leg for just a little sensation on their left one. I do not mean to be insensitive. This just seems important info to me.

“INPUT! NEED INPUT!”

[a quotation from the movie “Short Circuit” circa ’86. An experimental robot hit by lightning is transformed from a product the military industrial complex into a peace loving humanoid with human characteristics and feelings. After the strike, having no software guidance or instruction, he reboots and wanders aimlessly. Input, Need Input!. Paraphrasing another character from this movie...


Hurry, ”…WE ARE WASTING VALUELESS TIME…”

Radar

[AHolland]

Hi Radar,

NP pain does not usually migrate. It is more like new areas are added tothe old areas resulting in greater pain overall. I have been told that nerves actually do regrow, although only at a rate of 1mm per year and do not ever rejoin.

This means that as the body regrows these nervers that new areas may suddenly become linked into the system causing the migration. As a slight positive to an incomplete person, as the nerves improve their conduction of the sugnals, the areas that had NP in the past may instead improve and you find new sensation although very phantom like.

It is unusual in people that have had an injury for so long like yours. However, everyone is different and maybe your body is just repairing itself better than the average eprson. You also may find that one day your migration of pain may just stop as the body tops out for repair. I am sort of like yoruself in that the pain has slowly added more and more areas below my break (T4). I now have pain into my upper stomach that was not there even a year ago. I'm slowly getting eaten up as more and more of my body starts sending pain signals. Thankfully my areas do not seem to get worse with time, it's just new areas added into the pile.

[Radar]

AHolland, on Jan 7 2007, 05:03 PM, said:

Hi Radar,

NP pain does not usually migrate. It is more like new areas are added tothe old areas resulting in greater pain overall. I have been told that nerves actually do regrow, although only at a rate of 1mm per year and do not ever rejoin.

This means that as the body regrows these nervers that new areas may suddenly become linked into the system causing the migration. As a slight positive to an incomplete person, as the nerves improve their conduction of the sugnals, the areas that had NP in the past may instead improve and you find new sensation although very phantom like.

It is unusual in people that have had an injury for so long like yours. However, everyone is different and maybe your body is just repairing itself better than the average eprson. You also may find that one day your migration of pain may just stop as the body tops out for repair. I am sort of like yoruself in that the pain has slowly added more and more areas below my break (T4). I now have pain into my upper stomach that was not there even a year ago. I'm slowly getting eaten up as more and more of my body starts sending pain signals. Thankfully my areas do not seem to get worse with time, it's just new areas added into the pile.

AHolland,
I hear what you are saying about new areas and it seems logical that they would be added as regeneration occurs toward the feet. In my case, my posterior thigh was once pain free. The knee I think is where the pain first showed up. The knee is now relatively calm except during a crisis. When there is something drastic going on like an infection, in that case I get extremely sharp spasm in the knee too until the crisis clears up. Then relative calmness takes over again. I might want to point out my legs do not move at all. It definitely feels sort of like a Charley Horse or cramp.

The daily burning, almost never lets up pain definitely seems to have migrated from the knee to my lower inner thigh. On its way to my posterior thigh, areas that once were a problem have calmed down. As I mentioned before, during peak pain cycles the pain starts in my thigh and can radiate all the way up to my gluts. This occurs during each spasm in a periodic fashion. Rarely about every 5-10 minutes if I am lucky. Every 15 seconds if I am not. Bam! Bam! Bam! …It is like getting stabbed repeatedly.

Yes, I am probably preaching to the choir. My intent is to gain understanding of how NP manifest it self in other paras and quads.

Radar

[Radar]

Man, what a mess I just made. It is the same as the one above.

Edited by Radar, 10 January 2007 - 03:58 PM.

[susiejt]

Pain pain pain, well where to begin - this post is too long & a bit all over the place - please bear with me as i find it hard sometimes to know what is neuropathic pain & what is something else. So many weird sensations that my awareness & ability to differentiate can go haywire as well. i find the pain a weird & mysterious thing & am keen to read what people have to share as it helps understand the monster & give it less power i trust. Context - my SCi C7 with decompression & fusion surgery were in 2002 (i am walking, was slow recovery of some things, took 2 years before i could go far & learnt how to stumble less & to get up & down stairs without falling regularly; i only had temporary quadraplegia but other problems are permanent & life changing eg i never got back to my career - neuropathic pain, numbness, loss of sensation, motor weakness & fatigue with all the pain & mechanical spinal & connective tissue & joint problems that go with that; some muscle spasm / jerkyness & contraction, lumbar instability, dural tethering etc, 'wild nerve firing' that effects much of my body at the one time & verges on painful & sometimes is except the coldness & zing of it can make it seem less painful, some bladder & bowel probs but mild so i count myself very lucky & have often given myself a hard time for complaining or not just being happy with the miracle that i walk etc. My new Dr has been giving me a better perspective about it & teaching me subtlely not to push myself so hard & to let myself grieve appropriately & face & accept my limitations & the help i need to manage daily (especially since my 10yr partner left, ouch), still very hard for me to accept that help, still it can rip my heart out as i am sure we all feel every day.

Neuropathic pain - i remember becoming aware of it about 3-4mths after surgery & when i came out of my neck brace & started to be more mobile. I thought it would go away. It didn't. Initially it was in my lumbar spine & legs all the time & it was terrible & way above my pain tolerance which is pretty high - i tore a lumbar disc when relearning to drive & had a previous lumbar spondylo which was non-problematic but after SCI it all became unstable & effects my every possible movement & hurts endlessly & makes sitting very painful - presumed neuropathic pain. Eventually i gave in & started on Amitryptoline which made it more manageable. Then there'd be pain in my elbows, shoulders, wrists, hips (anything that maybe did more than a tiny bit of work or was it simply neuropathic, no one is sure).

Then a few months ago it started in my knees as well - so that even walking / sitting hurts my knees (no idea why & not mechanical i'm sure, so why??). Scary i have to say. Now my neck for about 5 weeks has been constantly & endlessly painful - i wake up with it hurting & it doesn't stop. The vice grip i call it. It used to be less painful if i was very careful not to turn my neck at all or use it much but now i can't seem to identify triggers that are setting it off & there is not respite - not even my snorkelling is helping - "hydrotherapy with a view". So is it neuropathic i don't know; but i don't know where it has come from & it is getting me down. I have various practitioners (acup, massage, feldenkrais, physio) so it's not that i need to go & have some treatment. It is like 'oh no not another area of intense pain'. There are manageable levels & then there is what pushes me beyond the endurance / coping. I know we all live with this daily.

Does it migrate or is it related to some nerve recovery i don't know but like others i am really keen to get some idea. I am also now having much more wild nerve firings than previous - they are definitely neuropathic & painful. Until recently they might be once every 2 days or so They would start at the base of my spine (sphincter) & rush up my body to my neck / shoulders & sometimes to the top of my head. Can be more front or more back or more one sided or the other - varies. They were for first few years a mixture of pleasure & pain really as it was a relief to 'feel' in many areas that don't feel much anymore & certainly don't feel light touch only pressure; however the intensity was painful & i would cringe almost until it passed, normally 20-120 seconds. Now it happens several times a day & is much more intense & is quite painful & lasts much longer eg can be hours now!!! I do not undrestand it at all. It kept me awake the other night for about 2hrs as it was too painful until i put the sheet on the exposed arm so that the nerves / brain were perhaps distracted by the sensation of the sheet or its weight.

For >4 years i didn't even have a Dr who could explain any of this to me at all (my Neurologist seemed irked that although miraculously "clawed back from death" that i didn't miraculously recover everything to pre SCI state ) - it was only last year that i found a Rehab Dr who could explain some of this bizarre neuropathic SCI stuff & now a great GP that worked in a Spinal Unit. This site helps me a huge amount & people's comments & feedback & sharing help, so that it's not such a lonely place to be with scary symptoms & huge mountains to climb . I am still in the early learning stage of SCI really, my GP calls it the "circumnavigation stage", it's sure confronting.

[Radar]

susiejt, on Jan 12 2007, 09:37 AM, said:

Pain pain pain, well where to begin - this post is too long & a bit all over the place - please bear with me as i find it hard sometimes to know what is neuropathic pain & what is something else. So many weird sensations that my awareness & ability to differentiate can go haywire as well. i find the pain a weird & mysterious thing & am keen to read what people have to share as it helps understand the monster & give it less power i trust. Context - my SCi C7 with decompression & fusion surgery were in 2002 (i am walking, was slow recovery of some things, took 2 years before i could go far & learnt how to stumble less & to get up & down stairs without falling regularly; i only had temporary quadraplegia but other problems are permanent & life changing eg i never got back to my career - neuropathic pain, numbness, loss of sensation, motor weakness & fatigue with all the pain & mechanical spinal & connective tissue & joint problems that go with that; some muscle spasm / jerkyness & contraction, lumbar instability, dural tethering etc, 'wild nerve firing' that effects much of my body at the one time & verges on painful & sometimes is except the coldness & zing of it can make it seem less painful, some bladder & bowel probs but mild so i count myself very lucky & have often given myself a hard time for complaining or not just being happy with the miracle that i walk etc. My new Dr has been giving me a better perspective about it & teaching me subtlely not to push myself so hard & to let myself grieve appropriately & face & accept my limitations & the help i need to manage daily (especially since my 10yr partner left, ouch), still very hard for me to accept that help, still it can rip my heart out as i am sure we all feel every day.

Neuropathic pain - ...

Susie,
WOW! Compared to you my problems have been as simple as A B C. I am not making light of everything you have gone thru. Al l I can say is that by having the fortune of being incomplete enough to walk, you should be way ahead of the curve. A lot of my secondary issues stem from not being able to walk. With no muscle tone, other body systems do not work well. I have poor return of the circulatory system, of the lymph nodes and as a result edema. You are fortunate in that respect. It is not clear to me if I would want to trade places with you walking and all.

My edema by the way is a catalyst which sets off the nerve pain by waking them up or making them sensitive. If I use a thigh high compression stocking, it too sets off the nerves. I cannot wait to take them off. I am dammed if I do and dammed if I don’t. Stockings otherwise work well below my knee where the sensation is very spotty and weak.

Skimming over your post, I think your pain migration has been in general toward your feet. That is what one would expect as regeneration occurs. Pain added in new and lower areas might be more like it until in all the confusion you can no longer tell when and where it will be coming from. Only the area that has the most pain is sensed by the brain, ignoring those with lesser pain. I am fairly certain that is true.

In my case, pain started at the knee and seemed to get better in general as time passed. I now go weeks and even months with no knee pain at all. The knee only acts up when something drastic is going on like in my bowels for instance. This at the expense of a new and higher locations sequentially acting up, MIGRATING UP toward the actual SCI site and not the peripheral nerve level such as L1 which is somewhere lower in the hips more or less. That is what I mean by migration.

Perhaps I should have stressed upwards migration of pain as opposed to the anticipated downward migration as nerves regenerate and grow in a downward trend. I have trouble understanding how and why it is so. Migrating up seems a contraindication of what is normally expected as I understand it. Those in the medical field do not seem to have an answer other than my PT. She believes pain will not stop migrating until it reaches the actual injury site or just below the normal area of the spinal cord. Why she does not know.

The problem is pain on my posterior thigh is debilitating enough. What will I ever do when it reaches the gluts? I practically cannot sit at times now! How am I supposed to sit in a wheelchair when the time comes? Sitting alternately on the points of sharp knives with my gluts on fire. Yeah, yeah, all of you have a good laugh. Call me dragon butt. Hot ass. Ha, Ha, Ha. At least for the moment by elevating my legs I can relieve the pressure on my thighs.

Radar

Edited by Radar, 13 January 2007 - 07:51 AM.

[susiejt]

Hi Radar,
Yes i did miss the import of migration upwards, hopefully someone else has more relevant input on it.
Ciao Susie

[Radar]

OOPS!

Edited by Radar, 31 January 2007 - 07:12 PM.

[Radar]

susiejt, on Jan 17 2007, 05:23 AM, said:

Hi Radar,
Yes i did miss the import of migration upwards, hopefully someone else has more relevant input on it.
Ciao Susie

Hi Again,
No one else has pain or sensation migrating up as opposed to the more normal migration down to the toes?

Radar

Edited by Radar, 31 January 2007 - 07:15 PM.

[T-Crip]

I know these posts are really old but I hope someone reads this. WOW!! I have NP and I thoguth I was the only one!!! I see now I am not. And I see that finding resolve is also frustrating for everyone. As if being paralyzed is not enough we have to deal with THIS too!

[edlee]

Hi guys,

I feel fortunate, having read your posts, that my NP isn't worse than it is. Mine started at the injury site when I first regained consciousness, and went down. Now I have , pretty much, constant burning/crushing everywhere below T-10. It isn't as severe as yours because I can function reasonably well as long as I can keep my mind or hands busy.

I've only been chaired since 04, so I doubt I've had much regeneration of nerve tissue. No one I talk to around here seems to have a handle on NP either. Just proscribe more gabapentin and say to see how that works.

I hope this thread keeps going, cause I could use some ideas on how to ease it a little.

ed

[EmHope]

Hi guys,

I do not suffer from pain nearly as much, but I do have nerve pain. I have recently stumbled upon wearable therapy. I am ordering it now. I'll let you know about it after a few months of trial. You can check it out at these web sites:

http://mypainmanager.com/
http://wearabletherapy.com/

I hope you can find a little relief in something.
EmHope