11 replies to this topic

[Somebody]

Bare with me. I'm just curious.


Where does all the pain come from?

or why don't I hurt that much?

I take baclofen for spasms,
and my legs or any part of my body rarely moves.
If it did it would bother me alot.
So why is my body so flacid?

I also take ultram & neurotin for tingling,
but not necessarily pain.

What kind of pain is it?

[edlee]

I'm not sure of exactly what you are asking. It seems, from your wording, that you don't experience much pain and are wondering why.

I can only speak from my own experience, but I hope you appreciate what you have ( or don't have, in this case). I started out three years ago with mild neuropathy at my dividing line( t-10) and nothing more. That has changed progressivly till I now have intense burning/squeezing from t-10 down a minimum of 75% of my in chair hours.

I've also gotten , recently, a new one , in my lower back ( below my level of sensation, who knows where that came from) that prevents me from driving or riding in a car for more than twenty minutes.

As you can see, not being in constant pain is a gift to be thankful for.

I apologize for the whining, and the only reason I haven't deleted this is because you asked. I'm not looking for sympathy...Life just is!
ed

[Somebody]

edlee, on Dec 27 2007, 06:18 PM, said:

I'm not sure of exactly what you are asking. It seems, from your wording, that you don't experience much pain and are wondering why.

I can only speak from my own experience, but I hope you appreciate what you have ( or don't have, in this case). I started out three years ago with mild neuropathy at my dividing line( t-10) and nothing more. That has changed progressivly till I now have intense burning/squeezing from t-10 down a minimum of 75% of my in chair hours.

I've also gotten , recently, a new one , in my lower back ( below my level of sensation, who knows where that came from) that prevents me from driving or riding in a car for more than twenty minutes.

As you can see, not being in constant pain is a gift to be thankful for.

I apologize for the whining, and the only reason I haven't deleted this is because you asked. I'm not looking for sympathy...Life just is!
ed

No you're right.
This is a serious question with no vindictivness.
I truelly was wondering why I don't hurt.

Maybe it's my high level?
You know everything paralized.

I'm sorry you (everyone) hurts so much. {hugs}
Seems like there's a lot of pain with sci.

I thank God I'm spared it.

God Bless edlee.
I pray you get your pain in control and stop hurting.

[LuckyinKentucky]

I think nerve pain is more common with lower injuries, maybe something to do with the injuries being closer to the peripheral nerve starting points. Oh and rods runnin through places you can feel can be a little uncomfy.

[dave420atya]

I am T 10 11 12 . I some times have so many stabbing pains it's unbearable .No meds seem to touch the bad ones . I may go days or even weeks without many bad pains , then all the sudden they fire up and I may get a stab every 10-20 seconds for 3 days. Then I can't eat ,can;t sleep can't do much more than scream cuss and cry and they are so bad that the time in between pains I'm scared cuz I know another is comming.After a few days of this I am nearing insanity.
My pains occur in the same 3 locations most of the time.I'm just coming out of a pain cycle right now . I hope its over I had enough! ough !shit there was a stab just then I guess it ain't over yet!I'm so tired and doped up every time I nod off , bam !there is another .I'm getting dehydrated from crying so much! I broke a tooth gritting my teeth. I'm loosing it! It sucks when you can't feel anything but pain below your injury level!my pain has put me in exile Ive Isolated myself virtually imprisoned now I'm all alone hurting and lonely. My pain has got a hold of me today but I may be fine tomorrow. It's my only hope for me but I have higher hopes for my family.
Well thats enough of my sobbing sorry for the what ever! I'm a mess right now!

[smokymtn memories]

I have pain/burning 24/7 since shortly after bone fusion surgery/c 4-5-6. I had some before the surgery, but it was'nt constant and I was'nt as mobile as I am now.

My neuro surgeon tried telling me it's because I'm healing and it should go away eventually. I'd like to believe him, but I'm not holding my breath. I'm affected the most from the waist down and my hands. My arms tingle and I don't always notice that too much.

Seems like the more paralysed I got before surgery, the less pain I had. Then afterwards it seemed severe every day. Now, there's no rhyme or reason to good days and bad. I just had two bad days, could'nt tell you why.

I'm glad to hear you're one of the "lucky" ones with little discomfort. Even tho I can move, walk with a cane, etc, the pain and burning can keep you cooped up!

[carole338]

Sorry for all the pain everyone is having. When I was an in-patient in Rehab one of the patients expressed his sorrow for my pain during a get-together. I told him my friend sitting next to me, who had a complete SCI around C5 would give everything he had to have my pain. I was a T10/11, incomplete. I know this does not help when the pain hits so bad you want to just give up, but I always think of that time and know I am more fortunate than so many others. At least we have this site to communicate our fears, feelings, experiences and help one another.

Carole

[kewlcatkez]

carole338, on Dec 28 2007, 03:46 PM, said:

Sorry for all the pain everyone is having. When I was an in-patient in Rehab one of the patients expressed his sorrow for my pain during a get-together. I told him my friend sitting next to me, who had a complete SCI around C5 would give everything he had to have my pain. I was a T10/11, incomplete. I know this does not help when the pain hits so bad you want to just give up, but I always think of that time and know I am more fortunate than so many others. At least we have this site to communicate our fears, feelings, experiences and help one another.

Carole

Hi,

I am not very good at talking about my 'issues' in real life or here on the net. I guess I feel like I don't want to burden others, and I am just a 'get on with it' type. This is probably do to my RN background. I am supposed to be the 'caregiver' not the one in this situation!... Its hard to vent
...
Like many, I feel guilty for my ( internal, introverted) whining as I have widespread pain, dislocations and the works. However, I have it better than some etc. Its taken me a while to 'get off my own case'. What I mean is that its still crap no matter if someone is worse off, and yet I wasn't allowing myself to acknowledge that somehow.

My pain is from the many dislocations I have, an underlying white hot sensation, throbbing and pinching and pins n needles which feel like they are on Acid. That is the widespread pain, I also have areas of pain which are targeted. I DO feel pain in the paralysed areas too.....I personally think that is really cruel since we have the normal sensations taken and replaced with what is almost hellish...
I hope this explains my situation.

Many believe that its those with Incomplete injuries who have pain and that those who are Complete, do not. However, I have friends who are complete who have bad pain. One person had no pain for a few years and now has had investigations into her pain which has developed, only to be told that its SCI related.

Take care,

K

[edlee]

Trust me, incompletes don't have a corner on the pain market.

Everything is relative, tho. Someone is always worse off than you,,,,unless you're him!!!

Measuring pain is always so subjective, no way to really compare it, even with ourselves. Does it hurt more than yesterday? Last week? last year??? Hard to say. What would have had me begging for pills last year is now merely " very uncomfotable".

It is amazing, what the human body can put up with.
ed

[Avocado Baby]

I feel lucky inthat I don't feel any pain below my paralysis, althuogh I have been told that people in my situation are hyposensitive in the areas where they do have sensation. My friends think it's hillarious how overly ticklish and sensitive I am. Sometimes I hate it when people touch my hands or my head. I've wondered recently though if it's the same with pain? Does the pain I feel in my upper body feel more extreme because I can't feel it in other parts of my body?

I also feel lucky that I don't have constant pain anymore after having been prescribed Lyrica. In my opinion, there's nothing worse than constant pain.

[Somebody]

kewlcatkez, on Dec 28 2007, 12:42 PM, said:

carole338, on Dec 28 2007, 03:46 PM, said:

Sorry for all the pain everyone is having. When I was an in-patient in Rehab one of the patients expressed his sorrow for my pain during a get-together. I told him my friend sitting next to me, who had a complete SCI around C5 would give everything he had to have my pain. I was a T10/11, incomplete. I know this does not help when the pain hits so bad you want to just give up, but I always think of that time and know I am more fortunate than so many others. At least we have this site to communicate our fears, feelings, experiences and help one another.

Carole

Hi,

I am not very good at talking about my 'issues' in real life or here on the net. I guess I feel like I don't want to burden others, and I am just a 'get on with it' type. This is probably do to my RN background. I am supposed to be the 'caregiver' not the one in this situation!... Its hard to vent
...
Like many, I feel guilty for my ( internal, introverted) whining as I have widespread pain, dislocations and the works. However, I have it better than some etc. Its taken me a while to 'get off my own case'. What I mean is that its still crap no matter if someone is worse off, and yet I wasn't allowing myself to acknowledge that somehow.

My pain is from the many dislocations I have, an underlying white hot sensation, throbbing and pinching and pins n needles which feel like they are on Acid. That is the widespread pain, I also have areas of pain which are targeted. I DO feel pain in the paralysed areas too.....I personally think that is really cruel since we have the normal sensations taken and replaced with what is almost hellish...
I hope this explains my situation.

Many believe that its those with Incomplete injuries who have pain and that those who are Complete, do not. However, I have friends who are complete who have bad pain. One person had no pain for a few years and now has had investigations into her pain which has developed, only to be told that its SCI related.

Take care,

K

Carole great analogy. I agree this site really helps.

I'm sorry too for those in pain.
It's is cruel to lose so much and be left with constant pain.
I pray God will intervien and stop your pain.
May God be with each of you.

K you're not a burden here.
We all care and want to help if not just by listening.
Please speak up. Sometimes getting it off your chest helps alot
{hugs} we here with you in the same boat Mona

Edited by Somebody, 30 December 2007 - 10:11 PM.

[kewlcatkez]

Somebody, on Dec 30 2007, 10:10 PM, said:

K you're not a burden here.
We all care and want to help if not just by listening.
Please speak up. Sometimes getting it off your chest helps alot
{hugs} we here with you in the same boat Mona

Hi "Somebody"/Mona,

Sorry that I didn't see this message/reply 'til now. Thank you! I have to admit that I am not very good at talking about my own situation, well not passed the 'story' we all have which gets an airing when folks 'ask' something, etc . like I said above, I think its probably mostly because I was supposed to be on the 'other' side of all of this type of crap! Of course, I am guessing that none of us really feels like they should be disabled...well unless they are 'wannabes' that is.

I also think that if I start, I will probably go on far too much and not be able to stop!

The fact that I hid many of my symptoms, until I could do so no longer, for fear of losing my job and because I was just so embarrassed ( thinking I was insane) probably has something to do with it too...I;m just not used to feeling able to. Its something I will have to work on.

Having pain probably isn't very productive when thinking at this time of the night ( or is that day?) either. I sometimes think one day without pain would be fabulous, but then I would probably not be able to life the days after, when it returned. Then my sensible side ( if there really is one!) tells me that I would, and to stop thinking too much!.....See, I'm going on!

I hope that you have a fabulous New Year,

Take care,

K

Edited by kewlcatkez, 01 January 2008 - 01:19 AM.