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Thread: Coping With Pain: Let's Get Real

  1. #71
    Quote Originally Posted by sjean423 View Post
    I don;t. If it is above my level of injury, I recognize the overuse/muscle pain in the part of my back that has sensation and that can use (and over use). When it is below my level, I usually attribute it to nerve pain or referred pain (when my back is killing me, but it may be caused b/c I did something to my know, or have a uti.)
    Thanx for explaining. I can't get a diagnosis for any of my pains. Even if they just said yes it's nerve pain or yes it's muscular I probably wouldn't believe them either way. I just wish I knew what I'm dealing with. One of these days I'll start a thread here to get ideas. I just know it gets old hearing about it and I sound like a broken record.
    Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash

  2. #72
    Have you ever considered the Translational pain studies at Brigham and Women's Hospital in Boston? They are amazing, really listen and have tons of patience. They had some clinical trials going that might benifit you.
    Every day I wake up is a good one

  3. #73
    Hey November,
    That drove me nuts when I tried to differentiate what component of the pain is neuropathic and which part is nerve root impingement and which part is arthritis or muscle pain. It is so complex that you have to start addressing one aspect of the pain and max out the therapy for it and see if you are any better. Take neuropathic pain - start treating it maximally with drugs. Are you any better? Then take arthritic pain, take celebrex, say. Is any aspect better? Treat the associated depression from all your suffering. What about exercise? Are you sure there is nothing impinging on nerve roots?
    I was so distraught with trying to figure things out that at one point I just quit trying. Took meds and said to hell with it and took meds and accepted my fate. Then about a year later, I regrouped and found I had nerve impingement, had surgery and at least got some relief.
    I hope you can sort through it somehow.

  4. #74
    Hi Cass

    Wishing you well.

    I am going to throw in a little technical stuff here, but you can skip the first four or five paragraphs and just read about how capsaicin can make believers out of skeptics.

    The capsaicin receptor is known as transient receptor potential vanilloid 1 (TRPV1) The vanilloids and cannabinoids are essentially part of the same group, so people speak of Capsaicin, TRPV1 and CB1 and CB2 receptors in the same sense.

    You may have read Dr. Young's post here about Protein Kinase C, which gates TRPV1 function. PKC has traditionally been said to phosphorylate (power) the TRPV1 receptor. However, the whole business has been throwin into a cocked hat by the discovery of a subtype, PKC epsilon, which actually reduces hyperalgesia in the central nervous system, while PKC CAUSES hyperalgesia in the peripheral nervous system. Furthermore, it has been shown that PKC does not phosphorylate TRPV1 after all, that job being doing by phorbol esters (PMA) with PKC acting as a sort of ligand for PMA to do this. Furthermore, embedding PMA into cells other than C fiber neurons makes them act like pain neurons of that type.

    You may also have read Dr. Young's explanation that all nerve injury pain tends now to be called "neuropathic pain" with Central Pain falling into disfavor. I prefer the old terminology for several biochemical as well as communication reasons. PKC epsilon is one of the biochemical reasons I favor holding off on lumping at this point. It suggests central therapies may different from peripheral nerve injury therapies.

    Capsaicin increases calcium flow which increases signal in pain neurons. Capsaicin activates the tiny C fibers by amping up receptors. Inflammatory proteases (mast cell tryptase and trypsins) cleave protease-activated receptor 2 (PAR 2 ) on spinal afferent neurons and cause persistent inflammation and hyperalgesia . These events in C fibers send signal to the cord, and in turn set off the actual big A pain fibers which have cell bodies just inside the cord and are powerful.

    Even locally, the area of sensitization from Capsaicin injection extends beyond the area where the Capsaicin is injected or could be diffusing, so something going on there as well. Probably something coming down from the cord to hypersensitize the surrounding uninjected area---this is called secondary hyperalgesia.

    One of the bigtime pain researchers published a paper where he had grad students inject capsaicin just so they could get an idea, then he did some tests on them. They must have wanted a grade pretty bad.

    In reality, capsaicin doesn't hurt very much. No more than a wasp sting. However, the NATURE of the burn isn't like other pains. THIS makes people aware of a new pain dimension. Becoming aware of something new breaks down their skepticism. The burning lasts about one half hour. They inject a miniscule amount and it is in a tiny area, so it is nothing like central pain all over the body. They do not get the sense of tissue destruction.

    Capsaicin burn is a pure burn. It doesn't have any of the other mixes of pain, such as cold, wetness, shooting, pins and needles. So they really still don't know what we are up against. It just breaks down the barrier and makes them aware that there is more to pain than meets the eye.

    In my case, I can accept ten times what they endure, and this also seems to leave an impression. If you inject capsaicin and then get in a warm shower, the burn will be worse. If you have a big sissy, just rub them down with capsaicin cream, let it soak in, and then have them get into a warm shower. This will do, but is not so convincing. Topical capsaicin followed by a warm shower is about one hundredth as painful as subq injection but the NATURE of the pain may fascinate them.

    Its basic use is to study TRPV1/cannabinoid receptors, but its ancillary use is to help PhD's understand that we are not just whistling Dixie.

    They just put the slightest bit subcutaneously. For a real jerk you might invite them to put it in their lip, their tongue, their fingertip, their whatever tip. Of course, you have to match the dare so why suffer more than you need to. The nipple is sometimes handy, for those who imagine themselves to be tough guys.

    Capsaicin also does not have the creepy component. it is just this strange burn, and it dawns on the researcher that something mysterious is happening. Capsaicin burning also has no specific location (ie lacks discriminative information) and this is NEW to normal person who can usually be very specific about where the pain is located. The borders of CP are also vague and even the location of the skin surface disappears in the burn. (atopoesthesia) This opens their mind to other things you can tell them. They also think about what it would be like to live with one tiny burn in one tiny area forever. This sobers them a little, especially if they can convince themselves that it is over a large area of the body.

    I am not being cynical. It drives them to do good pain work. Many of the most dedicated researchers have tried capsaicin.

    Pain of course receives almost NO basic research money. We borrow our knowledge from other socially acceptable research. For example, cannabinoid receptors are being studied now because they are involved in maintenance of bone density. Since osteoporosis is a socially acceptable problem, money is being spent to sequence the Cannabinoid receptors, and two or three new ones have been found.

    The chemistry of nerve injury Pain must nearly always borrow from other fields. It is not an entity worth funding on its own in the basic chemistry labs. REAL money which funds REAL labs studying other problems is providing most of the new information.

    Although more is spent on pain than any other medical condition, basic pain research is still mired in some theological myth that we are SUPPOSED to suffer on this earth, even as we worship a God, who is good, whom we believe RELIEVES suffering. Crazy thinking.

    If your pain is associated with a legitimate disease, it is a different matter. THEN, the public supports pain research. Marine toxins by the hundreds (from snails to rabbit fish) are known to act on pain nerves, but very few of them have been studied.

    Since no link between SCI and pain is known to the public, they have no idea anything needs to be done. The public will support money for paralysis after SCI, but not for pain relief after SCI, because it is not generally known to exist in people who are insensate. And the severity is not generally known EVEN AMONG THE MEDICAL PROFESSION.
    Last edited by dejerine; 01-05-2010 at 05:05 AM.

  5. #75
    Great post as usual, Dejerine.

    I, as one of "the public" will say that last bit couldn't be more correct - I've rattled around medical folks and hospitals more than most, especially in recent years.

    Yet - I thought of SCI as "legs don't work" (or obviously more extensive paralysis) but never thought about bowel/bladder issues, and had no clue that it would cause pain. I would have thought - cord doesn't work, can't feel anything (thus can't feel pain).

    I would imagine most people think the same, unfortunately.

  6. #76
    Quote Originally Posted by TAM63 View Post
    Great post as usual, Dejerine.

    I, as one of "the public" will say that last bit couldn't be more correct - I've rattled around medical folks and hospitals more than most, especially in recent years.

    Yet - I thought of SCI as "legs don't work" (or obviously more extensive paralysis) but never thought about bowel/bladder issues, and had no clue that it would cause pain. I would have thought - cord doesn't work, can't feel anything (thus can't feel pain).

    I would imagine most people think the same, unfortunately.

    I think this is an accurate discription of how most AB's view SCI/paralysis.
    "The truth will set you free. But first, it will piss you off." -Gloria Steinem

  7. #77
    It probably is. I'd like to think I'm not more clueless than the average person, and I'm sorry to admit I had absolutely no idea. I learned about neurogenic bladder (before I joined this forum) when my dog became paralyzed.

    I wonder how the public perception could be changed.

  8. #78

    Wink Wow, never thought telling someone of MY experience would cause a spark...

    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.
    Wow... sometimes I am left totally speechless (which doesn't happen very often)

    *rebajane* & *brucec* understood what I was trying to say. That is: Hey, I tried this and it worked for me. If you want to give it a try, great! and if you don't, great!

    We are here at CareCure because we want to share our experiences, ideas and support each other. I see all of us as essentially one big extended family. We all understand what we are going through and like a family, we are here to give each other support, a shoulder to cry on, positive reinforcement, or simply "It will be okay", etc. And, I'm no different. If I can help, I will!

    *thehipcrip*'s belief of "keeping busy", or "making yourself so tired you can't feel the pain" may not be dangerous, but it is insulting and offensive ???? I really don't know how to respond to it. Why is MY wanting and MY choice to keep MYSELF busy or tired to minimize MY pain offend or insult you?

    NEVER once did I presume my pain is worse or my pain tolerance is better than the next SCI-er. (I have days, I am sure most of you can relate, snow/rain/cloudy/windy/sunny days where the pain is hard to mask or forget, "I", the individual, made the choice of how "I" will deal with it.) I didn't find the right method for me right away, I tried many suggestions from people at CareCure and other SCI-ers. I was never offend or insult by ideas. We share ideas to help each other... and they are just ideas. People are welcome to try or not. There is no reason to be "offended" or "insulted" by someone's way of doing things. Once again, my method may not work for everyone, but it may work for someone. If you want to give it a try, great! and if you don't, great!

    I am suffering from severe nerve pain from 2 locations of my spinal cord. Not saying my is worse than everyone else but to point out that I have experience with pain, my pain. I am not saying that I understand all pain, but I am sympathetic towards pain and people in pain.

    *dejerine* thank you for the compliment. Thank you for the write up on pain, I enjoyed reading and learning about it. I never believed one pain is the same as another, or one person's suffering is identical to the next. I have many clients who are of the same classification as me, C 6/7 quad, but our pain level and tolerance level are all different and we all deal with it differently. It does not mean my way is the right way.

    To conclude this: I know MY pain and this is MY method and it works for ME (or maybe only me, no one knows). If you want to give it a try, great! and if you don't, great!

    Wish everyone to have a pain-less or less-pain 2010!


    "Always look at the bright side of life...."

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