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Thread: Is Pain a Priority?

  1. #1

    Is Pain a Priority?

    Central Pain is that pain which is caused by injury to the central nervous system. In its severest forms. Ron Tasker (neurosurgeon who discovered pain is carried in the spinothalamic tract) has declared it to be the most severe pain state known to man.

    The last person to quantify the number of central pain sufferers in the United States was John Bonica, inventor of the epidural block and author of a book on Central Pain. He estimated there are one hundred thousand CP patients in the U.S. By comparison, NASA has thirty thousand direct employees, but an estimated additional 200,000 Americans owe their jobs to NASA contracts. Two billion of the "bailout" money went to remodeling the Kennedy Space Center.

    The recent "thrifty" Discovery space shot cost 1/2 billion dollars (not over yet). This recent shot was to bring a storage unit to the Space Shuttle and had no scientific agenda at all. The ride for Senators John Glenn and Jake Garn was less efficient, costing two billion dollars each. Glenn's shot was called by the designer of the space shuttle, Sherm Hislop, a "two billion dollar boondoggle". Glenn himself said he had no idea what purpose his flight had, but was told by NASA it was for "medical research", notwithstanding that Glenn sat on the Senate committee which funds NASA, as did Garn. No other Senators went.

    So reasoning interest to the people involved, if there are 230,000 scientists and engineers, with an interest in NASA's operations and they receive something like 20 billion per year, then on a par comparison, Central Pain might reasonably ask for 7 billion for research for pain.

    The real dollar figure at the National Institutes of Health (pain is actually researched at the NIDCR division--a dental team providing the basic research) is the considerably diminutive amount of six million dollars. This figure covers basic science. Clinical research, which essentially involves studying what medicines we already have is somewhere around 195 million for clinical investigation.

    While many of the scientific goals of NASA, such as the space telescopes, are exciting and supported by many people, the National Science Foundation has NOT said this to be true of manned space shots, saying the money was not well spent. was primarily consumptive of funds and not productive of scientific advances, and had no apparent scientific objective.

    The head of NASA said that putting a man on Mars by 2037 has been passed by Congress and that he therefore regards it as the law, and willful failure to do so would be a violation of law. The space shot, costing four hundred million, where we bombed the moon, was said to be an attempt to determine how much water was on the moon (NASA has still not said how much) with the idea of mining water to use on such things as a shot to Mars and eventually colonizing the moon. I think we should cure pain first.

    It seems to me that every American has an interest in pain as well, since one in six will develop a chronic pain condition. Present pain meds are often addictive, dangerous, and in the case on Central Pain, largely ineffective, Opiate production is also linked to criminal activities. Huge amounts of money are spent for narcotics and pain relief--more money than for any other medical thing. In light of this, I wonder if we have our priorities straight. If cancelling one space shot would do the trick, maybe we should think about it. One less storage unit versus a nonaddictive, effective pain medicine. Advances in pain are quantum leaps. How much benefit to mankind was the discovery of ether worth?

    Better more effective pain meds, such as the efforts by Kenneth Hargreaves, a former NIH researcher, to develop antibodies to OLAMs (oxidized linoleic acid metabolites) seem at least as important as sending a storage unit to a space station which is due to be taken down in a few years.

    In fairness, we should mention spinoff from NASA. The most significant of these was an improved membrane for dialysis, which a researcher developed after working on a NASA contract. Pain research could also be expected to have spinoffs, of course. Linoleic acid metabolites are thought to cause atherosclerosis, alzheimer's and possibly cancer. Inflammatory chemicals are the next frontier of medicine at present.

    I plan to write to President Obama, hoping to put pain research on his radar screen. I also write to Hargreaves, praising him and encouraging him.
    Last edited by dejerine; 02-28-2011 at 07:17 PM.

  2. #2
    Is pain a priority? I'd have to say......no! Not if we go by the numbers for CP sufferers alone. What causes the scientific world to even start taking a look at central pain? What do we have to do, or how much greater does the number have to grow before they actually start to work on getting rid of central pain?

    I'm sitting here tonight just wishing I could put the powers that be in my shoes right now. I wish they could sit here, like I have, for the umpteenth night and be miseable. Dr Tasker is right.....the most severe pain state known to man.......

    I assume the dollar figure being so low for pain research, very little of it is even hitting central pain studies. How depressing.......

  3. #3
    Pain sufferers of all sorts are not a priority sadly! I dont think pain will ever be taken seriously. Why do I say this? Well simply because it has been my experience that even doctors and family members dont care about those of us who suffer with such god awful pain that even wearing clothes is agony. Sadly they never will which is why I unfortunately think it will never be made a priority ..

    Becky
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  4. #4
    Senior Member JEAPOW's Avatar
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    pain

    I have only been out of the hopital for L1burst fracture then a blood clot going to my lungs and another surgey and was not in as much pain as I am at home oh I forgot I have neuropathy pain that never ends and I was constantly asked need something for yor pain, do you need morphine, oxy, a sleeping pill, another xanax and now that I am home I needed a refill on oxy and they said well we think we should move to down to Vicoden?? Hey neuro nurse I thought I have PN pain and gabapentin does not seem to help and I don't have an other appointment til Mar 15. So am thinking now is how I am going to live begging for pain meds? My family does not understand my pain, is not saying too much about my meds, but they will after while. While I was in the hospital not knowing if I was going to make it or not every one rallied around me, now that I am home and made it everyone praizes the Dr's and how good I am doing but the PAIN subject never comes up....so who cares ME, and everyone else that has to deal with this.....maybe we need to speak up more?
    JeAnNE L1Burst Fracture inc. 11/5/10

    Live Well--Laugh often

  5. #5
    Because this pain is "invisible" it is not taken as seriously as it should be.
    I see my husband suffer and describe things that sound impossible.
    He is a tough guy and never a complainer, but the CP is whipping him.

  6. #6
    no, it isn't. in 25 (gasp 26 yrs this march 24) nobody in my life, including medical ppl, have really understood or cared much. 2 attitudes: i'm not in that much pain (how could i work, smile at all, etc.) or i'm just depressed which is causing pain. can't win.

  7. #7
    Jeapow

    Yes, it is funny now that you mention it. In hospital the medical profession is solicitous.. After you are out, you lose your validity as a patient. When I was in for my last surgery, the hospital took it as a matter of course, that I would need pain medicine postop. The thing is, I didn't take any. I lay there thinking I have more pain all the time than this surgery has caused. I have to face my central pain without meds, so why get narcotics for something less. This is not to suggest any of you should forego pain meds for surgery. I probably should have taken them. I think I was trying to prove a point, to myself, if no one else. I also did a root canal with no deadening, just to tell myself central pain was worse. I don't do that anymore. Too much pain drives you crazy and I have enough that I take the carbocaine now. Less of an axe to grind, I suppose.
    Last edited by dejerine; 03-02-2011 at 11:21 AM.

  8. #8
    Hi Cass,

    Very nice to see you holding a baby. I hope I did not offend you bringing up my perennial gripe about money spent for research not on pain. I am clearly a johnny one note. (Physical pain is the greatest evil --Augustine) I know you made a significant contribution as an engineer, and I probably have no idea what I am talking about. I just write and write to people trying to keep interest in Central Pain alive, and I know if there were money there, it would not be such a challenge. Those few researchers who are involved have voluntarily impoverished their labs. They do it altruistically. I would like to see the large body of biochemists see pain as an opportunity to get paid for their brains and hard work, not just the opportunity to run a shoestring operation.

    I could name a famous pain scientist whose research was funded by one of his patients! There is money for neuropathic pain of the peripheral nerve injury variety, such as diabetic neuropathy, because drug companies would love to have a good drug for the millions of diabetics, but honestly, there is VERY little for central pain. Hopefully, central pain can piggyback off the research being done on peripheral nerve injury pain. . I understand that you worked, hard, and wonder how you were able to do it. You have stuffed so much, that I cannot imagine it. Mind boggling.

    I think drug companies should take the gamble and do research because narcotics producers make so much money, that the demand is there for something that helps.

    I was looking over my folder from Rancho los Amigos yesterday and thought of you and tried to remember your posts and what you went through there. I had never had a doctor acknowlege that Central Pain even existed before Rancho, so I guess I was so grateful someone even admitted its existence (and that I was not crazy), that it was all gravy for me. This may not be accurate, since there were young men ending their lives there over central pain. These were mostly macho gang members who could not imagine the nervous wimps pain had turned them into. Of course, those who survive central pain are tough indeed--it just doesn't feel like it.
    Last edited by dejerine; 03-04-2011 at 02:28 PM.

  9. #9
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    The only pain most people care about is their own pain.....and right about the time they have some real pain then pain becomes important...while they have the pain.

    And now we have all of the pain pill mills making us look like drug addicts and pain pill mills Nazis to contend with....a frenzy of people who don't care about pain. Unless it is their pain. Then pain pills are ok. While they have the pain.
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  10. #10
    Quote Originally Posted by JEAPOW View Post
    I have only been out of the hopital for L1burst fracture then a blood clot going to my lungs and another surgey and was not in as much pain as I am at home oh I forgot I have neuropathy pain that never ends and I was constantly asked need something for yor pain, do you need morphine, oxy, a sleeping pill, another xanax and now that I am home I needed a refill on oxy and they said well we think we should move to down to Vicoden?? Hey neuro nurse I thought I have PN pain and gabapentin does not seem to help and I don't have an other appointment til Mar 15. So am thinking now is how I am going to live begging for pain meds? My family does not understand my pain, is not saying too much about my meds, but they will after while. While I was in the hospital not knowing if I was going to make it or not every one rallied around me, now that I am home and made it everyone praizes the Dr's and how good I am doing but the PAIN subject never comes up....so who cares ME, and everyone else that has to deal with this.....maybe we need to speak up more?
    Not to change the subject....But ^^ this is sooo true. In rehab they had me on sooooo much crap i could barley think strait. My neoro pain hadnt even kicked in to the crazyness it is now. I was in the hospital about 9 months ago for a UTI"which i cant really feel and they gave me as much narcs as I wanted, NOW....I AM having to beg for meds as usual.....jusy crazyness!!!
    Has it been five years yet? ..........

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