12 replies to this topic

[teaman]

I have difficult trying to explain to non-sufferers neuoro pain ( what words to use to explain the pain), how it changes how i feel sensations etc. i have BSS

C5/C6. Have alodynia.

Any words to describe these sensations?

Thanks for your time.

[lieutenant]

Google "Neuropathic pain"... It will give you concise and meticulous descriptions that you can use to express the pain you feel to people around you

[Robbo]

I explain my pain as being like having road rash and that seems to get the point across.

[lavenderthistle]

I described some feelings and issues in an 'essay help needed' thread somewhere on here last year. The best thing you can do, is just recall the things you experienced pre-sci which might be similar or relate-able and share those. Honestly I find that people don't actually want to know what it feels like, or really how you feel as much as they say they do. When you do finally share how you feel or what you can describe it best as, the frozen looks, the pained expressions, the clucks of sympathy etc all get to be a bit much and no one feels better. I don't really share now. That's more to cushion myself than to spare them. They feel like crap for asking sometimes, or I feel like crap for sharing...whatever...we both feel awkward.



Generally "I'm ok today", " don't really feel so great today" or "wonderful" with non sci friends

[Edinburgh Colin]

Lav's advice is spot on and pre-sci comparisons are sometimes the best.
cheese grater, all the skin removed, ground around in broken glass, red hot wires, joints being pulled out of their sockets, steel bands tightening/corset, red hot lead weights, ets, etc as she said you can kind of go on and on and you'll just get the glazed expression back and in the end they can't appreciate what you feel anyway!
Sorry not really much help!
EC

[teaman]

I described some feelings and issues in an 'essay help needed' thread somewhere on here last year. The best thing you can do, is just recall the things you experienced pre-sci which might be similar or relate-able and share those. Honestly I find that people don't actually want to know what it feels like, or really how you feel as much as they say they do. When you do finally share how you feel or what you can describe it best as, the frozen looks, the pained expressions, the clucks of sympathy etc all get to be a bit much and no one feels better. I don't really share now. That's more to cushion myself than to spare them. They feel like crap for asking sometimes, or I feel like crap for sharing...whatever...we both feel awkward.



Generally "I'm ok today", " don't really feel so great today" or "wonderful" with non sci friends

Thanks for replying

Thanks everybody all comments etc: accurate

nice to be among others who understand

went on a chronic pain course told not to relate to it too much but as you all understand its difficult when it becomes a part of you

[Scratch11]

I preferred to describe it as a belt sander and electrocution with steel bands.

[Edinburgh Colin]

I preferred to describe it as a belt sander and electrocution with steel bands.

I like that one, but the electrocution is slow, insteat of the lightening bolt going at light speed it's a bit more tortuous, maybe the speed of sound or something. hah
EC

[Tetracyclone]

Agreed, I think most just feel helpless if we describe our pain, and helpless is not a fun feeling. I (hope) I am coming out the end of the last 4 hours o some of the more excruciating pain I have endured, and if it all ends with one big fart who do I want to tell? Nope, not even you guys. It is just too stupid for words. I must feel a LOT BETTER- I am on the internet!

[DxM]

Hey Teaman,

Like you and everyone else who's posted here I know neuro pain and the difficulty of trying to explain it to other people, which includes those in the medical profession at times too . I agree with what Lavendarthistle and others have said, as I sure wish I didn't know what it feels like, so I doubt anyone else really does want to know either, or if they do they soon wouldn't if they got to feel it 24/7.

It's odd that you were told not to relate to the pain too much though as the knock on from that is dissociating from the part or parts of your body that feel the pain, which in turn carries it's own problems . I've always found relating to the pain much more effective than trying to seperate myself from it, but like everything, I suppose it's all personal.

As for an example of the kind of pictorial description I'd use...I'm currently wearing a pair of inflatable trousers that cover an infinite number of paper cuts all over my legs, feet, bits and butt, some are fresh, while others are festering with infection. The trousers are filled with scalding hot sea water that burns and grinds saltily in the wounds. The water's awash with angry Portuguese men o' war and a handlful of baby tiger sharks that have been fired into a frenzy by all the bloody cuts and they're biting, tugging and tearing at my flesh. Just for good measures a sea turtle is using its beak to rip off my big toenail as I type this. You get the picture from that I'm sure!

I hope the Chronic Pain class you're attending is helping some and you find a way to be able to manage sharing this kind of stuff with others or chosing not to, if that works better for you.

DxM

[teaman]

Hey Teaman,

Like you and everyone else who's posted here I know neuro pain and the difficulty of trying to explain it to other people, which includes those in the medical profession at times too . I agree with what Lavendarthistle and others have said, as I sure wish I didn't know what it feels like, so I doubt anyone else really does want to know either, or if they do they soon wouldn't if they got to feel it 24/7.

It's odd that you were told not to relate to the pain too much though as the knock on from that is dissociating from the part or parts of your body that feel the pain, which in turn carries it's own problems . I've always found relating to the pain much more effective than trying to seperate myself from it, but like everything, I suppose it's all personal.

As for an example of the kind of pictorial description I'd use...I'm currently wearing a pair of inflatable trousers that cover an infinite number of paper cuts all over my legs, feet, bits and butt, some are fresh, while others are festering with infection. The trousers are filled with scalding hot sea water that burns and grinds saltily in the wounds. The water's awash with angry Portuguese men o' war and a handlful of baby tiger sharks that have been fired into a frenzy by all the bloody cuts and they're biting, tugging and tearing at my flesh. Just for good measures a sea turtle is using its beak to rip off my big toenail as I type this. You get the picture from that I'm sure!

I hope the Chronic Pain class you're attending is helping some and you find a way to be able to manage sharing this kind of stuff with others or chosing not to, if that works better for you.

DxM

Nice description very apt thanks for your input.

[wheeliebear75]

Lav's advice is spot on and pre-sci comparisons are sometimes the best.
cheese grater, all the skin removed, ground around in broken glass, red hot wires, joints being pulled out of their sockets, steel bands tightening/corset, red hot lead weights, ets, etc as she said you can kind of go on and on and you'll just get the glazed expression back and in the end they can't appreciate what you feel anyway!
Sorry not really much help!
EC

Yeah 2 thumbs way up on Lav's advise.

I tend to use the "Stockings several sizes too tight with fire ants dumped down the back so they bite my butt & backs of my thighs".....not that I've actually had ants dumped down my stockings.....though I have had stockings become too tight like when I was a kid & gone through a growth spurt. The thing I find stumps most people is that they don't understand that we feel ANYTHING let alone pain.

So I've explained to people that the spinal cord works like the wires of stereo headphones, and that many of us who "broke ___" or dislocate ___ have some signals getting through, & that like a pair of headphones with a short in the wire you may get some crackling but not even be able to tell if it's music or talking or you could have it where there is a crackle that you can still tell what's playing or being said but some of the sylabols or a few notes will cut out or it will work OK but only if it's held at just the certian angle.....and that the crackling is like PAIN to us because it's the nerve's way of saying "Hey there's been a propblem right HERE!" but this isn't something like a splinter we can remove from our hand so it's just a constant "Ow-mail" that is sent back & forth from all the effected nerves to the brain. I've explained the spinal cord in this way to children as young as 5. It was how Children's Hospital explained it to me when I was 1st hurt & a patient there.....easy to understand & 90% of people have at least a fundamental understanding of how wires work.

Agreed, I think most just feel helpless if we describe our pain, and helpless is not a fun feeling. I (hope) I am coming out the end of the last 4 hours o some of the more excruciating pain I have endured, and if it all ends with one big fart who do I want to tell? Nope, not even you guys. It is just too stupid for words. I must feel a LOT BETTER- I am on the internet!

Hope you're feeling better Tetra!

[Edinburgh Colin]

Love the stereo headphones analogy very descriptive.
EC