24 replies to this topic

[pinkcloud]

I speak of phantom pains here (that is...theres no infection/injury/bladder/bowel to come out)...

Why do the nerves decide to give horrid sensations ....its like they had a big party at the time our cord got injured...and its hangover time for them.

Burning pain:
To me feels like cystitis in the veins...

Freezing cold nerve:
To me feels like we have been in the snow too long...

What about spaz atttacks..me legs jump about like dying fish of water until they stop...sometimes its like me bodys being shocked by a heart machine revier thing....to others it just like i'm an epilectic taking speed....

So if they spaz is it to stop you doing a certain movement and be temporary paralyzed in or...do they spaz to make you jump away from danger and powers th muscles to try to jump us away?

Edited by Apparelyzed, 13 September 2011 - 06:30 PM.
Title edited to reflect topic content

[brockit79]

Hi PC,

This is what I made of the answers I got to these questions when I asked them, I am not sure whether I learned parts of it when I studied and whether I have made parts of it up, but listen/read and see what you think.

Neuropathic pain is an abnormal pain sensation which has no physical cause by this I mean it is a perception of pain as opposed to actually being caused by noxious stimuli. The brain wants to connect with each and every nerve but is unable to because of the disruption to the spinal cord. The brain interprets this disruption as pain. This is why medication which is successful in the treatment of neuropathic pain are the brain fry drugs (that's what I call them) because they fry or numb your brain cells for want of a better, more scientific, explanation. Other diseases can give neuropathic pain symptoms such as diabetes. Uncontrolled diabetes can affect peripheral nerves so maybe there is multiple pathology going on???? I do not know if it is still the case, but when I studied, Amitriptyline was used off licence for the treatment of diabetic neuropathy. How its use was discovered I don't know.

Spasms, these can be, as I understood it, from actual problems below the level of paralysis or noxious stimuli to these areas which cause real pain to the body but because the pain signals cant travel to the brain they travel in a loop causing excitatory presentations in the form of spasm or jumping.

I can't offer anything as to why I liken some of my pains to being stabbed in the back with a blade, I never have been and pray to the powers that be I never am, but I do.

Broc

[Tinbasher]

The explanation of spasms given to me by my physio goes like this ......

Normal spinal cord

1. Foot steps on a sharp stone

2. Message goes up the nerves in your leg to the spinal cord.

3. When the message reaches the cord the cord does two things with it, firstly it sends a message back down to the foot as an initial response to move your foot after all i doesnt know if its a sharp stone or a sabre tooth tiger gnawing at your leg. Secondly it sends the message upward to your brain so it can actually ascertain whether it is a real risk or just something annoying but harmless.

4. The bain then sends a message down to your foot saying dont worry its just a sharp stone.

Spinal Cord injured above T12

1. Foot steps on a sharp stone

2. Message goes up the nerves in your leg to the section of the spinal cord below the break.

3. When the message reaches the surviving section of cord the cord does the same two things with it.

4. What happens of course is that the brain never gets the message because of the break so the actions in 1, 2 and 3 become a feedback loop of pain - reflex- movement -pain-reflex-movement etc But as the brain never "feels" it we dont know why it is happening.

The more of the cord that survives below the break the more powerful the spazm can be.



Tin

[nomis]

Phantom pains are caused by phantoms. It's a bit scientifically complex but I blame Zorro, the Lone Ranger and The Phantom.

Edited by nomis, 13 September 2011 - 10:19 PM.

[ebeth]

I remember once accidentally spilling some hot water on my thigh. Not enough to burn, thankfully, but it was still hot. My thigh's response was to spasm once or twice in response to the pain. Therefor, I reason that my spasms are in response to pain, whether I know the source of that pain or not.

[pinkcloud]

Thanks simon for the title change

Broc, thank you, I dont understand big science/medical talk, simple terms like this works great for me.


ooo lol, fry....them meds are like the water hose that dampens down the fire-ey nerve pain signals to a smoke..now i see how the term 'head feeling foggy' pehaps comes from.

Thanks for explaining the pain thing, now it make real sense and was the missing piece in me puzzle x

[nomis]

If you'd really like to learn more about phantom things, including phantom pain, you could watch the program on this link:

[greybeard]

Thanks, Nomis. That is fascinating stuff. I shall enjoy watching the rest of the series that I missed when it was broadcast..

[rue2you]

Just as a reference point and I don't think I'm alone because I have met other para's who do this - but it is not just pain that triggers mine. A door slamming, the phone ringing or a kid just coming up and touching my shoulder can also trigger my spasms. It amazes me how entwined it all is - from our ears to what our skin feels. EVERYTHING is affected by our nervous system and when it is out of whack it can do some crazy stuff. We truly are "fearfully and wonderfully" made!

[wheeliebear75]

Hey thanks Nomis!

It's pretty interesting the way the brain can rewire itself & how the whole body works.


Children's explained it in the context of headphones or a telephone with a short in the wire. But I think Tin explained it pretty thoroughly.

[knightrider]

Just as a reference point and I don't think I'm alone because I have met other para's who do this - but it is not just pain that triggers mine. A door slamming, the phone ringing or a kid just coming up and touching my shoulder can also trigger my spasms. It amazes me how entwined it all is - from our ears to what our skin feels. EVERYTHING is affected by our nervous system and when it is out of whack it can do some crazy stuff. We truly are "fearfully and wonderfully" made!

Im the same, If a loud bang or noise that makes me jump, even if im expecting it to happen will cause a sharp pain through my legs and then a big spasm, if anyone touches my back softly or taps my back it also makes me jump and triggers a spasm. Its strange. All other causes of spasms are through pain/uncomfort where i can't feel. But the worst type i hate is the loud noise trigger like a door slamming etc because it really hurts my legs.
I don't know what all that is about but the way i think of it, is that when i had my car accident it was my legs that were first to be injured with the dashboard exploding around my legs, maybe my brain remembered the split second pain before my back broke in half and associates that loud bang when the car hit with pain. I don't know lol. But when i was in hospital and the nurses used to slam things like the bin lid after taking off their gloves or something, it would send that huge pain through my legs. It felt like someone planted a grenade in my bed.

As for the burning sensation, my legs are constantly burning, like the type of feeling you get from coming back into a warm house after a day in the cold snow. I'm used to that now, thats nothing compared to the strong hot blow torch type of pain that also feels like someone is slicing you with a sharp knife and electricuting you all at the same time down your left side and leg. Now thats Pain! Unfortunately no pain meds seem to work completely for that, only Amitriptyline has some effect but kinda knocks me out lol.

Sci is one crazy injury, not only does it paralyse you but also gives you hell with horrible pain/feelings.

Edited by knightrider, 13 September 2011 - 11:38 PM.

[pinkcloud]

I too get spasms in times of stress and upset and fear..maybe its because these are the emotions i felt at the time of the accident and the brain panics thinking oh no...quick danger. Thanks knight rider and Rue, that made sense to me puzzle.

Nomis excellent thank you.

Maybe the brain dosnt want to accept the arm has been amputated..as the Dr said, the body is a map and his brain is hungrey for information on the right side.

emotions...I think thats why we remember some songs more than others..its not the tune/words is just more memorable..its the emotions about the time we used to sing along to it..i mean 10 years or so later we sing all the words....even though we had it amputated from our minds long ago.

I thought maybe the man used to touch his cheek when he was worried...maybe it was the emotions that promte the memory of his hand being involved?Thus h remembers how it was to feel his arm?

Tin...ohh yeah saber tooth tiger or a stone...another example of how medicine progresses as such a fast rate yet. Thanks for sharing this is the best spaz explanation yet.

thanks all, for facts any your understandings of how things work, Facts are great, personal thoughts help us relate to the facts better i find anyway.



.

Edited by pinkcloud, 14 September 2011 - 04:59 AM.

[Edinburgh Colin]

Just as a reference point and I don't think I'm alone because I have met other para's who do this - but it is not just pain that triggers mine. A door slamming, the phone ringing or a kid just coming up and touching my shoulder can also trigger my spasms. It amazes me how entwined it all is - from our ears to what our skin feels. EVERYTHING is affected by our nervous system and when it is out of whack it can do some crazy stuff. We truly are "fearfully and wonderfully" made!

Im the same, If a loud bang or noise that makes me jump, even if im expecting it to happen will cause a sharp pain through my legs and then a big spasm, if anyone touches my back softly or taps my back it also makes me jump and triggers a spasm. Its strange. All other causes of spasms are through pain/uncomfort where i can't feel. But the worst type i hate is the loud noise trigger like a door slamming etc because it really hurts my legs.
I don't know what all that is about but the way i think of it, is that when i had my car accident it was my legs that were first to be injured with the dashboard exploding around my legs, maybe my brain remembered the split second pain before my back broke in half and associates that loud bang when the car hit with pain. I don't know lol. But when i was in hospital and the nurses used to slam things like the bin lid after taking off their gloves or something, it would send that huge pain through my legs. It felt like someone planted a grenade in my bed.

As for the burning sensation, my legs are constantly burning, like the type of feeling you get from coming back into a warm house after a day in the cold snow. I'm used to that now, thats nothing compared to the strong hot blow torch type of pain that also feels like someone is slicing you with a sharp knife and electricuting you all at the same time down your left side and leg. Now thats Pain! Unfortunately no pain meds seem to work completely for that, only Amitriptyline has some effect but kinda knocks me out lol.

Sci is one crazy injury, not only does it paralyse you but also gives you hell with horrible pain/feelings.

I used to have the blowtorch feeling in my left thigh and was taking Gabapentin which worked great on that and the feeling that the soles of my feet were being removed with a cheese grater. I've stopped the Gabapentin over the last month and the leg pain has passed but the foot stuff is there but not so strong. I can associate with the snow defrost feelings as I find it's the best way to explain my sensation as I'm incomplete.

[brockit79]

I too get spasms in times of stress and upset and fear..maybe its because these are the emotions i felt at the time of the accident and the brain panics thinking oh no...quick danger. Thanks knight rider and Rue, that made sense to me puzzle.

Nomis excellent thank you.

Maybe the brain dosnt want to accept the arm has been amputated..as the Dr said, the body is a map and his brain is hungrey for information on the right side.

emotions...I think thats why we remember some songs more than others..its not the tune/words is just more memorable..its the emotions about the time we used to sing along to it..i mean 10 years or so later we sing all the words....even though we had it amputated from our minds long ago.

I thought maybe the man used to touch his cheek when he was worried...maybe it was the emotions that promte the memory of his hand being involved?Thus h remembers how it was to feel his arm?

Tin...ohh yeah saber tooth tiger or a stone...another example of how medicine progresses as such a fast rate yet. Thanks for sharing this is the best spaz explanation yet.

thanks all, for facts any your understandings of how things work, Facts are great, personal thoughts help us relate to the facts better i find anyway.



.

If I dont sleep my symptoms are worse. Don't know if yall get this.

[The Black Vegetable]

yes same for me, the only way I get rid of nerve pain is to sleep and hope its better when you wake, in the morning I usually know if its guna be a good day or bad for nerve pain.

[Bryans Mom]

If you'd really like to learn more about phantom things, including phantom pain, you could watch the program on this link:

wow! That is really cool...and informative! Thanks for posting it. My son is paralyzed from the neck down and he has lately been saying he feels some imaginary arms feeling numb?? Wondering how that fits in to this brain thing....since his injury it so high.

[greybeard]

If I dont sleep my symptoms are worse. Don't know if yall get this.

I get the reverse. The blowtorch on my right thigh usually wakes me two or three times each night. 30 mg of Amitriptyline reduces the pain substantially for much of the time, but it's still severe enough to disturb sleep. The burning doesn't always seem to be touched by the meds and then sleep is impossible until it subsides.

[wheeliebear75]

Buttocks, backs of the thighs & the bottoms of my feet with the left side being worse.

I like the cheese grater analogy EC! I'd also toss in the analogy of wearing a pair of stockings & dumping in some angry red ants.

The TENSION ITSELF is probably what causes the spasms. It's related to the autonomic system where normally the body TENSES UP, but then the brain sends a message along the lines of "OK muscles we can relax now....this is not something that we'll need to fight or flee from.". Our emotions & physiology are to an extent tied together. So whether it's the jumping from being startled where normally there is the ready to fight or flight syndrome starting it is quickly disregarded by the brain & the body told "stand down" you brain makes the same decision that it is "nothing" only the muscles aren't getting the "stand down" orders. With EMOTIONS.....I suspect it's a bit like asthma which can (& does for ME) have an emotional component AS "a trigger" (trigger= allergy or anything else that sets off an asthma attack).

And Nommis I watched the other episodes of that show on YouTube. VERY interesting!

[pinkcloud]

Edinborough Colin

.i'm lucky, i only get cheese grator feet in the morning when i wake up now due to bad full bladder. Ok its not nice that i awake everyday not to sunshine rays..but the thought of 'ohh gosh i have turned into a piece of 'phantom' cheese'....good job i got me cats to scare away from any 'phantom' mice with cheese grators hey

why the heck does no doctor understand why i get burning/cheese grator feet when other people tell them the same thing? ......ggguuurrrrhhh i felt like i had been the only person ever to have told me doctors this.....and i crnge telling them this crazy sci stuff..like i in an audition for some science fiction film writing competition

Did you get any explanations ? Not that it would help me so why i still wonder why things happen, i dont know lol. Amitriptylin got rid of mine more than anything.

[pinkcloud]

hi brockit...yes they do get worse when i am tired. So do spasms.

Ya know what me friend, i think that these nerve pains....aint always phantom.

The bottom of me feet started cheesgrating....i had full bladder. It was telling me this. Verdict in me opinion- not phantom.

The teeth start hurting...i had tooth absess. Verdict - not phantom.

I have stupid ones in me thigh like gb has...i end up getting this real sore muscle spasm there. Verdict in me opinion- not phantom.

I dont listen to nerve pain much really....i think its there just to pee me off...but really....they aint all 'phantom' but who can tell hey. Thing is, if we spent all day watching the nerve pain ...we would go bonkers. Plus how boring a pass time.

Anyway it sounds like them who looked after you at owsestry thought everything you had was 'imaginary'...just like they did at the 2 hospitals i went too.... we find out that actually they are 'real' we think 'great get your medicine out' then they say 'but....theres not much to help really as they are phantom'...

great hey...being upgrated from 'malingerer' to 'phantom'....right...that was worth the stress of waiting for test results hey mind you as long as they say they dont harm us thats good for me.

[brockit79]

a good overview;

http://www.thecni.or...-p20-balazy.htm

[Edinburgh Colin]

a good overview;

http://www.thecni.org/reviews/09-1-p20-balazy.htm

That's a fair old read Kel, looks pretty interesting so far but I'll have to go back to it later to read more.
EC

[brockit79]

a good overview;

http://www.thecni.org/reviews/09-1-p20-balazy.htm

That's a fair old read Kel, looks pretty interesting so far but I'll have to go back to it later to read more.
EC

Hey EC,

It explains more scientifically about the theories/reasons as to why we get neuropathic pain. It seems to be a mixture of receptors in the brain and abnormal nerve regrowth.

In a nut shell that oral medication is often based on empirical evidence hence why, for example, amitriptyline is used off licence for neuropathy. If you have debilitating pain after 1 year post injury there are surgical options but they, obviously, have risks attached.

All we know for sure is that we, who get pain, describe it similarly, and that medication may or may or work.

:-/
Broc

Edited by brockit79, 17 September 2011 - 10:54 AM.

[jenny407]

My son is paralyzed from the neck down and he has lately been saying he feels some imaginary arms feeling numb?? Wondering how that fits in to this brain thing....since his injury it so high.

Dear Bryans Mom, let me welcome you to the forum! Do feel free to post, ask questions or just vent. People are very helpful and understanding here. All the very best to you and your son.

Jenny

[wheeliebear75]

yes same for me, the only way I get rid of nerve pain is to sleep and hope its better when you wake, in the morning I usually know if its guna be a good day or bad for nerve pain.

Yup same here. And sometimes this pain can wax & wane throughout the day.