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Thread: Coping With Pain: Let's Get Real

  1. #21
    I don't find China Dolls advice "dangerous". Just another example of the degrees of pain and control technics in the SCI life. The brain is suppossed to be most powerful organ we have. I don't think anyone here critizes anothers choice to control their pain, in fact I think we all have the upmost sympathy for those that suffer. I always had a high tolerence for pain both before and after my injury. Have never taken anything stronger than Aleve, Tylenol, a good stiff drink or 2. I don't know why my pain is endurable. I don't know why yours is not. But I empathize with you and wish I could help.My only advice is to keep searching.

  2. #22
    Quote Originally Posted by Danine
    ChinaDoll, I'm glad the "mind over body" thing has worked for you, but I think your advice is dangerous. This kind of thinking inspires guilt in people for whom this mindset does not work. My pain is not the kind of thing that I can just "suck up," "pull myself up by the bootstraps," "grit my teeth and go on," etc. My pain is real. It is not a creation of my mind; and it is not something that I can just will away. Goodness knows, I wish I could do that.

    Again, I'm glad your approach has worked for you; but please don't make the mistake of thinking that your approach can work for everybody.
    I love you for this.

    I doubt anyone would tell a vent-dependent quad that breathing without assistance is a mind over body thing. Telling someone that controlling their neuropathic pain, which comes from the same type of physical damage that prevents a vent-dependent quad's diaphragm from working, that it's really just a matter of not "sitting around all day", "keeping busy", or "making yourself so tired you can't feel the pain" may not be dangerous, but it is insulting and offensive.

    There is enough negativity and stigma associated with usiing medication, especially opiates, to manage pain well enough to have some semblance of a life. It may not be intentional, but hearing about how you think your way free of pain, or have such a strong tolerance to pain that all you've ever needed is Tylenol, adds to that stigma. It implies that we are somehow less in control of ourselves or have a lower pain tolerance than you. The subtext is that we're weak and that if we were just a little stronger, we could do those things too. We're already fighting these misconceptions in our doctors' offices, at our jobs and schools, and sadly, in our communities and homes. The last thing we need is our fellow crips making remarks that make us feel less than strong because our pain is of a nature and duration that have pushed us past the breaking point.

    Sheesh, I intended to give you my take on your original post, Danine, but I got so riled up over this issue that I spent my last energy on it. I'll be back tomorrow when hopefully my stamina will be higher, my pain will be better controlled, and my right arm will be functional enough to type with two hands instead of one.
    Last edited by thehipcrip; 01-01-2010 at 02:27 AM. Reason: were and we're are not the same
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  3. #23
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    Quote Originally Posted by Danine View Post
    Darklighter, thanks for sharing your story and your poem. I'd like to see some more of your work. The poem you shared shows lots of talent. And welcome to CareCure!

    Danine,

    Here is another one



    Psychological warfare
    Still bear the scars from a past war ceased
    Neurological nightmare
    Torture suffered holds the mind from peace

    Can't face reality unrestrained mentality
    Hiding from the darkness of your insanity
    Driven to soul despairs
    Madness in your mind tears
    No escape from this mental insanity

    Captive life, held in past
    Deranged memories still burning in your brain
    Thoughts of pain, darkest dreams
    Self-inflicted torture, eating at your mind
    Punishment, no pain release
    Captive to the darkness of this psychotic insanity

    Tearing in deep mind
    Madness dwells with pain
    Destruction of your life
    Renders you insane
    ---------------------------------------------------------

    sometimes i feel so far away
    other times i think i need a change today
    unwanted feelings of despair from inside
    and all i want is a place to hide

    sometimes it makes me really angry
    other times it gets me really sad
    but every time it happens the only thing i see is...
    black, black, black, all i see is...

    i just want a little piece of mind
    away from all my pressures and the daily grind
    i just want a place where i can be
    away from all the things that trouble me

    could things be better at the end of the road?
    or will the world outside still be cold?
    for the inner tranquility that i lack
    turns everything i see black
    --------------------------------------------------------

    undermine the system that brings destruction
    our lives are the cancer to their oppression

    if you think the reason we are here
    is to fight our brothers and sisters and lovers
    you must realize it's ourselves we fear

    do you feel the tension in our land?
    from the hate zone to the high rise all built by man

    distrust authority
    the only rules are your own
    spilling blood for a piece of dirt
    shows what a human being is worth

  4. #24
    Hello China Doll

    Nice handle and nice pic.

    Here again I think we are up against a lack of vocabulary. I am sure you do not understand what some here mean by use of the term "central pain". I realize your remarks are intended to be helpful and are sound advice for a certain type of physical distress. The problem is that we have only one word to go around, "PAIN". It is inadequate.

    If you wrote that one should just think like Dr. Spock and walk into a mound of fire ants and that mind control would take care of any burning, you would receive plenty of challenges on that account. I happen to know of a performer who used to do fire walking for five or ten minutes but who was unable to endure nerve injury pain which never stopped. So analogies may never tell the real story. Time of endurance is a factor.

    Confronting those who allege unbearable pain does not mean that in their desperation they are comprised of those who have never thought of distracting activity. It means their pain exceeds the ability of those attempts to make a difference. Few people subjected to pain will do nothing to avoid it. Getting out, exercising, etc are important but the relentless erosion of the soul and loss of identity continue as severe pain has its way. Terrible, unremitting pain induces a form of insanity. Even insane people can tell themselves to calm down, try to go on, etc. but their sanity is not restored--they must invent substitute constructs of thought which permit life to go on.

    Everyone here who is still alive, and that applies to a fair number who are only partially alive, has already done what you suggest, ie find ways to try to focus on other activities, exercise when possible, have friends and so forth. For me, most of the time, avoiding stress works better, although you go stir crazy if you don't do something occasionally. (I recommend the Eagle's DVD optically cabled version of "Seven Bridges Road" Annie Lenox's "Into the West" or Abba's "Does Your Mother Know" or any favorite tune at high volume, for times when you just are losing it--this also confuses your teenagers who think they alone appreciate cool music). Good earphones cost about what one pain pill does, so think it over. Heck, for the price of a good pain workup, you could buy the best B&W speaker setup. (Or for free you can go to the store and drool over them)

    The problem is that Central Pain can elaborate in a surprising number of ways, as well as degree. Percentage of body surface is also a huge factor. Although CP is predominantly centripetal, the pains may be in the feet alone, or they may be over the entire body, in the eyes, inside the mouth, up the urethra, or as Arndog pointed out, even in the unnamable places located near the seat of your pants.

    For another example, about sixty percent with CP have muscle pains. These are often fairly severe and in some, as Beric has published, the pain is so severe that the person is functionally paralyzed. In CP, the muscle pain may be like sitting in a confined position for a very long time (common form of torture, widely condemned in the press), a cramp or rending of the limb, OR it can be kinesthetic dysesthesia, which is pain from taking a load on a muscle.


    More than half of those with central pain from SCI also have mechanical pains from injury to the motion segments of the spine. These are often very severe. Most agree that the normal person experiencing such pain would immediately resort to the ER, NOT to a meeting with clients.

    A person with severe muscle pain who drove themselves to relentless activity would soon exhaust mental reserves. Since preserving mental reserves is essential to the avoidance of self harm, that is why many, such as hip crip have written about the problems of a mind/body perspective. Her analogy to someone on a ventilator is very apt. No mind control will prevent asphyxiation if the ventilator fails. They may will with all their might that the ventilator resume function, or that the diaphragm begin to contract, but the mind requires a connection, and if the connection has been severed, hasta la vista baby.

    Pain, by comparison, is generated by the brain when certain injuries occur. The pain is a response to acids being produced by glia around the neuron. If you pour acid on your hand, you will burn, whether or not you are with clients. If you produce fatty acids by glial activity which affect the neuron, the mind will not be shutting that burning off, client or no client. If this goes on long enough, you must then simply attempt to avoid becoming a burned out hulk. Any human feelings represent a triumph in that area and it would be unrealistic to speak of career performance as a curative for years on torture. When you are being tortured you do not feel spiritual, human, beatific, lucky, or anything like that. The home page of your mind has been hijacked by the pain.

    Some skeptics are absolutely ferocious about the whole matter, as if their egos are engaged, such as might be seen in an argument over politics or religion. There is probably no one here who has central pain who has not been accused by some minister of lacking the faith to be healed. Yet, these same ministers do not castigate those who are paralyzed. Paralysis is the big time in the real world, and pain is incidental, temporary and periodic, or so they think. Their perspective may be similar to what they say to get someone to stop drinking. YOU CAN DO IT. But in CP, there is an acid machine, over which you have no control, which is torturing your pain neurons. Glial activity is unconscious, nonvolitional, and there is little the conscious brain can do to alter the situation, although of course we ALL attempt to do so by whatever means are available.

    Unrelenting unending pain exists in its own world and is bulletproof. The durability of central pain is a remarkable thing. At first I felt some obligation to settle this matter for the skeptic by challenging them to hold their hand in a Bunsen burner to see who withdrew first, to settle who was weak to pain. To suffer injury just to dent hard heads seemed silly. Now, for the hidebound mind/body person, I find a capsaicin challenge more effective. Capsaicin excites the C fibers which recruit the large A fibers up in the dorsal horn of the cord, which generates a type of nerve insult pain. The mind altering power of a little capsaicin placed subcutaneously in both myself and the skeptic is impressive. I already burn, so can deflect the experience. The uninitiated find their arguments about mental suppression empty, particularly if I choose a sensitive area of the body. This and this alone seems to change minds. At the NIH, it is common for postdoctoral interns to inject a little capsaicin just to see what it is like. They generally do this just once, and there are NO skeptics among that group of highly trained PhD's. They get the message very quickly.

    Any declaration or demonstrations can be an idle ceremony for some dug in self adulatory tough guys who refuse the capsaicin challenge. They simply declare that they cannot believe the body would do that to itself, produce inflammatory cytokines which cause neuroinflammation. Production of professional papers showing that BDNF NGF and other such chemicals are MEASURABLY increased in CP lab animals fails to convince the hard heads.

    There is frequently a point where we have to simply discount the attitude of the persons free of pain, or sometimes more stubborn, who themselves have some degree of pain, who pride themselves in THEIR power of will.

    About "Pain". Anyone who has boxed in a golden gloves tournament, played center linebacker, had a bad day in the Olympic distance ski jumping competition, had a wedgie, or stood for hours in a choral competition, learns how to deflect pain, but none of it will suffice for endless central pain. If you were having a lifelong root canal without injection, then you might have something for comparison. There is burning, lancinating pain, pins and needles, muscle pains, pseudoclaudication, and a fairly impressive array of torture devices set in cases on the CP wall, waiting for you, and you had better not exhaust your reserves or you may find yourself checking out.

    P.S. Darklighter, nice poem.
    Last edited by dejerine; 01-01-2010 at 06:12 PM.

  5. #25
    Senior Member justadildo's Avatar
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    i've given up on even trying to explain to anyone w/o nerve pain, how it feels....tired of hearing, "how bad can it be if you function like you do ?".....we have no choice...stay drunk ?..stay high ?...live in med fog ?......i really can live with sci...pain is the challenge

  6. #26
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    Quote Originally Posted by justadildo View Post
    i've given up on even trying to explain to anyone w/o nerve pain, how it feels....tired of hearing, "how bad can it be if you function like you do ?".....we have no choice...stay drunk ?..stay high ?...live in med fog ?......i really can live with sci...pain is the challenge

    I agree!

    It's hard for one to understand without livening with the pain. To some people its sounds unreal but it's NOT!

    Distrust Authority The Only Rules Are Your Own!

  7. #27
    Senior Member brucec's Avatar
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    Quote Originally Posted by thehipcrip View Post
    I love you for this.

    I doubt anyone would tell a vent-dependent quad that breathing without assistance is a mind over body thing. Telling someone that controlling their neuropathic pain, which comes from the same type of physical damage that prevents a vent-dependent quad's diaphragm from working, that it's really just a matter of not "sitting around all day", "keeping busy", or "making yourself so tired you can't feel the pain" may not be dangerous, but it is insulting and offensive.

    There is enough negativity and stigma associated with usiing medication, especially opiates, to manage pain well enough to have some semblance of a life. It may not be intentional, but hearing about how you think your way free of pain, or have such a strong tolerance to pain that all you've ever needed is Tylenol, adds to that stigma. It implies that we are somehow less in control of ourselves or have a lower pain tolerance than you. The subtext is that we're weak and that if we were just a little stronger, we could do those things too. We're already fighting these misconceptions in our doctors' offices, at our jobs and schools, and sadly, in our communities and homes. The last thing we need is our fellow crips making remarks that make us feel less than strong because our pain is of a nature and duration that have pushed us past the breaking point.

    Sheesh, I intended to give you my take on your original post, Danine, but I got so riled up over this issue that I spent my last energy on it. I'll be back tomorrow when hopefully my stamina will be higher, my pain will be better controlled, and my right arm will be functional enough to type with two hands instead of one.
    The OP was about pain and suggestions, chinadoll posted what worked for her, period, didn't read in her post where she was telling vent people to get off the vent, etc etc, just what worked for her
    We must reject the idea that every time a law's broken, society is guilty rather than the lawbreaker. It is time to restore the American precept that each individual is accountable for his actions.
    Ronald Reagan

  8. #28
    Senior Member alan's Avatar
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    Hope no longer springs eternal in me. When one can't function due to upper back pains, has to force food due to abdominal pains, has difficulty concentrating and remembering thanks to pains, and keeps getting worse over 28.5 years, hope eventually gets beaten down (that is the point of torture, after all.) I force myself to get out of bed, and do a little typing, but it takes a lot out of me. I was never a positive person, but pains have made me even more negative over the years. Shrinks haven't helped. I just want to fall asleep and not wake up, and don't apologize for that. Paralysis is visible. A broken limb in a cast is visible. Pain is not. If someone went to bed pain-free one night, and woke up with pains like people here have, they'd scream their heads off. MJ can actually make pain worse, by heightening perception of it.
    Last edited by alan; 01-01-2010 at 06:37 PM.
    Alan

    Proofread carefully to see if you any words out.

  9. #29
    Quote Originally Posted by brucec
    didn't read in her post where she was telling vent people to get off the vent, etc etc, just what worked for her
    From the reference.com entry for analogy:

    5. Logic. a form of reasoning in which one thing is inferred to be similar to another thing in a certain respect, on the basis of the known similarity between the things in other respects.
    It's another tool of writing, like proper grammar and spelling.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  10. #30
    Danine, thanks for the nice comment somewhere above in the posts. I didn't see it till today...

    I for one have found pain to be a very personal thing that varies from person to person. What works for one person MIGHT work for someone else, but it might not.

    Some folks have a higher tolerance of pain than others. What is a #11 on a scale of 1 to 10 for one person might be a #7 for someone else.

    Ya just never know...

    A few years back, I went to my orthapedist probably spelled wrongly and he was on vacation, so I saw his attending PA. The PA wrote me out of work for 2 weeks because of my severe hip pain, and gave me what then was the newest drug on the market, Bextra...which has since been removed by the FDA...but...

    When I asked the receptionist to give me an excuse for work, she got MAD...and started yelling to me AND to the whole waiting room that she could NOT BELIEVE that I was being wrote out for "a little hip pain". She even humiliated me further by calling the PA on the phone to verify what he had written...(like I had written it)...and ARGUED with him that I did NOT need to be written out of work for "a little hip pain!"

    Now when she got her medical degree and became able to measure MY pain is still a mystery. But I was so angry, having to use a cane to walk, and IN PAIN...and my Dad was with me, and he SAW that I was about to go across the counter...and I am NOT a violent person...and he took his hand, laid it on my arm, and said..."Simmer down!"

    You better believe that when I got back for the next appointment, I found her SUPERVISOR...and I told her EVERYthing she said, and how everybody in the waiting room was staring at me like I was a criminal...and I told the DOCTOR too...who happened to be not just a Dr. but a family friend.

    And guess what? The Dr. wrote me out for an additional two weeks, due to the continued inflammation of my hip.

    And the supervisor promised to speak to the girl.

    and the next appointment I had...that receptionist was not there...and I am thinking she got her walking papers. She sure deserved them. I told the Dr. and the supervisor that she was in the wrong job and the wrong profession, because she did not know the meaning of the word compassionate....sigh...

    I hope we all can continue to try to find medical staff who know the meaning of the word compassion....

    Teena

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