33 replies to this topic

[leafybug01]

i have feeling from head to toe just cant feel pain or temperature. i dont get spasms either. anyone else have that same feelings??

[wheeliebear75]

I have trouble with sensation; on one hand I have a hard time feeling where my foot is precisely compared to my hands which are normal but yet something like socks being rough on the inside feels like my feet are being cut. So there is diminished sensation yet at the same time hypersensitive. I also have trouble with the temp and pain sensation not quite being there. I can move my legs but there is not the strength for them to do me enough good to not need the chair. I can however do some walking like around a room with forearm crutches.....but I still often wait to do that when there is a spotter as I generally need help getting to a standing position & I also tend to fall as my legs buckle under me very easily. But as you'll discover we all end up with different outcomes & abilities even when we have "similar injuries".

[leafybug01]

wheeliebear75, on May 10 2009, 08:13 PM, said:

I have trouble with sensation; on one hand I have a hard time feeling where my foot is precisely compared to my hands which are normal but yet something like socks being rough on the inside feels like my feet are being cut. So there is diminished sensation yet at the same time hypersensitive. I also have trouble with the temp and pain sensation not quite being there. I can move my legs but there is not the strength for them to do me enough good to not need the chair. I can however do some walking like around a room with forearm crutches.....but I still often wait to do that when there is a spotter as I generally need help getting to a standing position & I also tend to fall as my legs buckle under me very easily. But as you'll discover we all end up with different outcomes & abilities even when we have "similar injuries".

yea i think im losing sensation in my feet. even though i can feel socks being put on but light touch of anything i cant feel it.

[E-DOG]

Yup.
Sensation's a weird one all right. I have a little everywhere below my injury, t-4/5, but not much.
Yet some days, in the afternoon, the bottoms of my feet will start to hurt. Like my legs weigh a thousand pounds and they're pressing down on the foot rests really hard. Especially the heels.

Originally when first injured I could barely feel Stanley at all. But I am one persistent son of a bitch and with lots of nightly attention he's started to come around. Some times with a little help from my friends, his sensitivity returns completely and then some.

Funny how we are all so different in that respect. Shows ya how complicated the nervous system really is. And why even the experts know so little about it.

E

[jass1]

i can feel my legs and feet with a lot of pain,if i stretch or massage my legs it burn real bad

[Yasko]

leafybug01, on May 10 2009, 04:04 PM, said:

i have feeling from head to toe just cant feel pain or temperature. i dont get spasms either. anyone else have that same feelings??

Same here, except I can't feel pain or temp below my knees!

[Hikkakaru]

I have full sensation below my injury, however parts of my right leg are slightly desensitized to temperature. Nothing major.

[StillFingers]

leafybug01, on May 10 2009, 04:04 PM, said:

i have feeling from head to toe just cant feel pain or temperature. i dont get spasms either. anyone else have that same feelings??

I have sensation from head to toe, can feel hot/cold everywhere, have loads of spasms and am visited by our friend hypersensitivity quite regularly. Just luv this quaddie body...31yrs now, maybe no movement back, but I'm still kicking arse. As far as the pain thing...you could stick a fork in me and I couldn't tell you if I was done or not...fun eh!

Jerry

Edited by StillFingers, 11 May 2009 - 04:37 PM.

[wheelywendy]

i get quite a lot of spasms in my legs and they can be very hypersensative, sometimes a light knock can be agony , yet when my old electric scooter's front sheared off on a bridlepath, i lay there on the track and realised i had blood on my hands, checked both dogs over thinking one of them were hurt, but found nothing, my carer then checked me over found blood on my jeans knee, she pulled this up to find a 1inch wide hole right through to my knee cap and i hadnt felt a thing, turned out the handgrip had gone into my knee.
the nervous system is so odd, when you think a small knock can cause pain yet a deep injury like that and you feel nothing. doesnt make sense

[joye]

This post is from Andrew . . . he has great interest in this question and would LOVE some feedback to find out if anyone else is experiencing what he is.

I hope we can explain this thing properly enough so that it is understandable.

Andrew can feel arms and legs . . . but not his "real" arms or legs . . . we call them "phantom" limbs. Sometimes (if he concentrates really hard) he can somehow put his "phatom" limbs inside his "real" limbs, and then he has a good awareness of the "real" ones, some sensation, and we can get a little movement out of them too. Now, when the "phantom" arms/legs are NOT inside the "real" ones . . . he can move fake ones around and touch things (like me) and he says it feels kind of normal, but a little "gushier" than normal. Also . . . when his "phantom" limbs are not inside "real" ones . . . invisible things stick to them (which drives him crazy), and sometimes the "phantom" legs get hung up on his chair wheels, and this actually causes him pain in his legs. It's been so bad at times, that he has asked me to lift him out of chair so that he can put the "phantom" legs back into his "real" ones. I always accommodate the request, but sometimes I feel like I did when my daughter had an "invisible" best friend and she wanted me to set a place setting for her at the table.

He feels like he's going crazy . . . and is hoping someone else has experienced something like this so that he can feel it's a little "normal" for his condition.

BTW . . . to answer original question of whether or not he has feelings below level of injury . . . Yes! He can feel touch (light or hard) in certain areas all the way down his arms and some in his fingers (even when "phantom" arms are NOT in). He can also move some fingers (only when "phantom" arms are in). He can also feel pressure in his toes. If I squeeze a toe, he can basically tell me which one I'm squeezing.

Joye

[leafybug01]

has anyone heard their doctor tell them "if you're in pain just try and think that you are running or on a bike."? i use to think this was some kind of joke but it does work for me, and its really weird to me too.

[Hikkakaru]

joye, on May 11 2009, 03:01 PM, said:

This post is from Andrew . . . he has great interest in this question and would LOVE some feedback to find out if anyone else is experiencing what he is.

I hope we can explain this thing properly enough so that it is understandable.

Andrew can feel arms and legs . . . but not his "real" arms or legs . . . we call them "phantom" limbs. Sometimes (if he concentrates really hard) he can somehow put his "phatom" limbs inside his "real" limbs, and then he has a good awareness of the "real" ones, some sensation, and we can get a little movement out of them too. Now, when the "phantom" arms/legs are NOT inside the "real" ones . . . he can move fake ones around and touch things (like me) and he says it feels kind of normal, but a little "gushier" than normal. Also . . . when his "phantom" limbs are not inside "real" ones . . . invisible things stick to them (which drives him crazy), and sometimes the "phantom" legs get hung up on his chair wheels, and this actually causes him pain in his legs. It's been so bad at times, that he has asked me to lift him out of chair so that he can put the "phantom" legs back into his "real" ones. I always accommodate the request, but sometimes I feel like I did when my daughter had an "invisible" best friend and she wanted me to set a place setting for her at the table.

He feels like he's going crazy . . . and is hoping someone else has experienced something like this so that he can feel it's a little "normal" for his condition.

BTW . . . to answer original question of whether or not he has feelings below level of injury . . . Yes! He can feel touch (light or hard) in certain areas all the way down his arms and some in his fingers (even when "phantom" arms are NOT in). He can also move some fingers (only when "phantom" arms are in). He can also feel pressure in his toes. If I squeeze a toe, he can basically tell me which one I'm squeezing.

Joye

It's actually called Phantom Limb Syndrome. It's common amongst amputees as their physical limb is gone but their neurological system still knows that a limb should be there. It's the source of a lot of pain for them. Maybe it's a similar thing?

Check this link out, http://en.wikipedia....ki/Phantom_limb

[Joewee13]

I can feel everything but for some weird reason my tummy area is kinda numb. I'm c4-c5- injury to.

[wheeliebear75]

leafybug01, on May 12 2009, 12:42 AM, said:

has anyone heard their doctor tell them "if you're in pain just try and think that you are running or on a bike."? i use to think this was some kind of joke but it does work for me, and its really weird to me too.

No I've never heard of that one for medical advice.


Someone had mentioned that it seems a bit odd how we can feel a small knock but then not something "big". I think it odd myself but I also have that. I have to give sweat pants & socks away when they start getting those little beads in them as it feels like I've got gravel in their place. On the other hand I've had someone park their electric scooter on my foot & I didn't feel it breaking several toes & one of the smaller bones in the foot itself. Go fig.


Paralysis is like a box of chocolates........you never know what you're gonna get.

[ClaraTaylor]

My partner tells me off so often because my legs are covered in huge bruises and cuts and I have no idea what caused them (apparently playing guess the offending object by the shape of the bruise is not funny).
And yet if someone so much as brushes my knee with a piece of cloth I will leap and squeal like a cat on a hot plate. I have cried like a baby over the sheer agony such a touch can cause...

Maybe I'm just a complete wimp!

[Tetracyclone]

joye, on May 11 2009, 06:01 PM, said:

This post is from Andrew . . . he has great interest in this question and would LOVE some feedback to find out if anyone else is experiencing what he is.

I hope we can explain this thing properly enough so that it is understandable.

Andrew can feel arms and legs . . . but not his "real" arms or legs . . . we call them "phantom" limbs. Sometimes (if he concentrates really hard) he can somehow put his "phatom" limbs inside his "real" limbs, and then he has a good awareness of the "real" ones, some sensation, and we can get a little movement out of them too. Now, when the "phantom" arms/legs are NOT inside the "real" ones . . . he can move fake ones around and touch things (like me) and he says it feels kind of normal, but a little "gushier" than normal. Also . . . when his "phantom" limbs are not inside "real" ones . . . invisible things stick to them (which drives him crazy), and sometimes the "phantom" legs get hung up on his chair wheels, and this actually causes him pain in his legs. It's been so bad at times, that he has asked me to lift him out of chair so that he can put the "phantom" legs back into his "real" ones. I always accommodate the request, but sometimes I feel like I did when my daughter had an "invisible" best friend and she wanted me to set a place setting for her at the table.

He feels like he's going crazy . . . and is hoping someone else has experienced something like this so that he can feel it's a little "normal" for his condition.

BTW . . . to answer original question of whether or not he has feelings below level of injury . . . Yes! He can feel touch (light or hard) in certain areas all the way down his arms and some in his fingers (even when "phantom" arms are NOT in). He can also move some fingers (only when "phantom" arms are in). He can also feel pressure in his toes. If I squeeze a toe, he can basically tell me which one I'm squeezing.

Joye

From the wonderful world of spirituality and energy medicine:
We have an etheric body, which is like a template of what out body is meant to be. Normally it does not separate from our physical body. Trauma of all sorts can push us out of our physical body; it might happen because of an accident, it might happen because of emotional trauma, sexual abuse, or torture.

Once separation has occurred it can be a challenge to bring the two back together again. People typically feel like they are crazy, as do those around them, but it is the sign of a person gifted with unusual sensitivity to non-physical planes, or energies, whatever you wish to call them. If these individuals are cherished and find help they can often make unusual contributions.

It is like the old problem of children who see imaginary friends. You see, many of those friends are real spirits who are invisible to those of us who are stodgier, or who simply lack that sort of visual acuity. If everyone insists the child sees nothing, the child will turn off the ability in order to be accepted into the herd.

I made real progress from my injury when my friend prescribed a meditation designed to bring my etheric body back into the physical one. I felt a little more energetic ( hehehe).

Trust his perceptions.

pwuff

[Ratticis]

Yep, and I've been told (By the ABs and "doctors") that I'm full of shit and lying to try to get attention.

[mcferguson]

I have no feeling below my injury other than phantom sensations.

[McTavish]

Id say I have about 75% to 80% feeling below my injury level. It,s amazing how no two sci injuries are the same.

[Kwag_Myers]

My injury is at T12 but my Dermatome function is not effected until the L4.

[Meadowlarkmark]

Me too. I have pretty goood pressure sensation and fairly good heat/cold awareness usally if I know the object is going to hot or cold but if I don't my perception is not as good as I think...been burned a couple times over the years...

[kim wright]

i am t12 complete no pain but no feeling or movment

[The Black Sheep]

I'm the exact same, I can feel almost everything except pain or temperature. Over the last 11 years though, some things have changed. I feel the ache from sitting too long on my tush and my back. The arch of my feet have become more sensitive to temperature, even though I still can't feel it. When I put me feet in the bath tub, they jump because of the warm water, or it I put my foot on tile, it jumps from the cold. Fickle feet!

[Zack]

Every year During my yearly checkup since my first year post SCI, My Doctor has Me with a folded towel over My face as I'm tortured from Toes toe Naval ( Where I Stop the Test due to too much Pain ) from the severe Stinging of him dragging his skin prick needle up my leg with Me saying "Ouch, Ouch" the whole time! He has tried tricking Me by switching from one leg to the other. He's failed every year. And He Labels Me a C5 incomplete because of Completely Normal Sensation from Naval up. below naval My skin can't distinguish between Hot & Cold unless they're extreme temps. Yet I can distinguish between someone's skin touching Me, whether it's plastic, medal or a soft face cloth. Weird why No Hot or Cold!

No spell check. Forgive Me

Edited by Zack, 22 March 2012 - 03:49 AM.

[wangqi]

joye, on 11 May 2009 - 11:01 PM, said:

This post is from Andrew . . . he has great interest in this question and would LOVE some feedback to find out if anyone else is experiencing what he is.

I hope we can explain this thing properly enough so that it is understandable.

Andrew can feel arms and legs . . . but not his "real" arms or legs . . . we call them "phantom" limbs. Sometimes (if he concentrates really hard) he can somehow put his "phatom" limbs inside his "real" limbs, and then he has a good awareness of the "real" ones, some sensation, and we can get a little movement out of them too. Now, when the "phantom" arms/legs are NOT inside the "real" ones . . . he can move fake ones around and touch things (like me) and he says it feels kind of normal, but a little "gushier" than normal. Also . . . when his "phantom" limbs are not inside "real" ones . . . invisible things stick to them (which drives him crazy), and sometimes the "phantom" legs get hung up on his chair wheels, and this actually causes him pain in his legs. It's been so bad at times, that he has asked me to lift him out of chair so that he can put the "phantom" legs back into his "real" ones. I always accommodate the request, but sometimes I feel like I did when my daughter had an "invisible" best friend and she wanted me to set a place setting for her at the table.

He feels like he's going crazy . . . and is hoping someone else has experienced something like this so that he can feel it's a little "normal" for his condition.

BTW . . . to answer original question of whether or not he has feelings below level of injury . . . Yes! He can feel touch (light or hard) in certain areas all the way down his arms and some in his fingers (even when "phantom" arms are NOT in). He can also move some fingers (only when "phantom" arms are in). He can also feel pressure in his toes. If I squeeze a toe, he can basically tell me which one I'm squeezing.

Joye

i can feel my anal part when i have bowel care. but it suffers because i can not push on my own so i have to be help by the carer totally. i would like to know could i have feelings back in other parts.

[joye]

Wangqi,

I've learned a lot since my original post to this topic (done in May, 2009). I have read and been told that those who have any feeling whatsoever in their anus can be considered an "incomplete" injury. Are you an incomplete injury by chance?

Although this can be an annoyance to those who have this sensation . . . maybe it can be a comfort to know this sensation could mean being an incomplete rather than a complete injury.

[rollingtrouble]

I have feeling from head to toe as well, but "dead" spots all between. Most of the feeling I have is not very sensitive, more like I can feel pressure, but not nearly the same sensitivity as when I touch my face. I get false senses of hot and cold, I don't sweat anymore, and I have to be really careful in the heat. I have "relearned" a lot of sensations and signals my body trys to tell me, I have to really pay attention to what it is trying to say, but there is still a lot of confusion, and some frustration at times. The joys and challenges of SCI are many!

[Edinburgh Colin]

I have full sensation below my T3/4 injury but only deep sensation. I can feel someone touching me but you could gently punch my leg or stab it and the feeling would be the same. I have had a couple of wounds and they can be cleaned with wet gauze and I feel nothing except a remote feeling of some wiping motion, no pain from the contact with raw flesh.
I broke my right femur last summer, spiral fracture leading to a compound break and had to be in traction, the throbbing pain from the area of the break in traction was more painful than the actual snap and initial shock, felt queasy and sick but amazingly no AD (even though I do get it) so go figure that one!
I do have hyper sensitive feet and the lower portion of my left leg, burning, broken glass being rubbed into it type sensation, for the first year post injury it felt as if my feet were immersed in warm sand, lovely feeling that was! but it didn't last.
Recently at nearly 3 years post now I have an increasing area of pain across my back just below the injury line with a spot about 6 inches in diameter on my right shoulder which hurts like buggery and ir very tender to the touch almost like it was a recent impact injury.

So even a clearly diagnosed case of Incomplete has seen significant changes over 34 months. I have some movement of my left leg but not functional, not changed much in the last 2 years, small amount of abbs on my left side and I can wiggle my right big toe twice and then need a 5 minute rest before I can do it again.

There you go, clear as mud.
EC

[wangqi]

joye, on 27 March 2012 - 11:59 PM, said:

Wangqi,

I've learned a lot since my original post to this topic (done in May, 2009). I have read and been told that those who have any feeling whatsoever in their anus can be considered an "incomplete" injury. Are you an incomplete injury by chance?

Although this can be an annoyance to those who have this sensation . . . maybe it can be a comfort to know this sensation could mean being an incomplete rather than a complete injury.

thank you for your warm reply. it would be less frustrate to know that i am incomplete. now i am working on exercise hoping that i can do more on my own

[LeviM]

joye, on 27 March 2012 - 11:59 PM, said:

Wangqi,

I've learned a lot since my original post to this topic (done in May, 2009). I have read and been told that those who have any feeling whatsoever in their anus can be considered an "incomplete" injury. Are you an incomplete injury by chance?

Although this can be an annoyance to those who have this sensation . . . maybe it can be a comfort to know this sensation could mean being an incomplete rather than a complete injury.

I'm sorta confused by the whole complete verses incomplete criteria concerning the presence or lack there of in the anal region. I'm diagnosed as an incomplete yet I have zero sensation in my bum. I do however have sensation in my upper chest and back that is below my level of injury but no function anywhere below the level of injury. My SCI doctor says it's incomplete if a person has any sensation or function below their injury level. It's confusing how different doctors use different criteria for their diagnosis of complete verses incomplete.