new research and treatment suggestions for dealing with chronic pain

Discussion in 'Fibromyalgia Main Forum' started by ellikers, Nov 27, 2010.

  1. ellikers

    ellikers New Member

    Hey all!

    Some of you may recognize my name, I've been around here on and off for several years (started back when I had CFIDS, then mostly recovered, and then resurfaced after developing more fibro-like symptoms)....

    I had the opportunity to go to a great conference presented (mainly) by two leading medical professionals who work on issues of chronic pain. The conference was for medical professionals AND people dealing with chronic pain, to better educate all of them about new research and treatment options that incorporate changes in the way medicine is coming to understand the effects of pain in the body and brain.

    Here's a link to the description of the conference:

    It was a REALLY amazing experience! Super informational and very supportive and respectful of all the people with pain in the room as being the experts on their own experiences.

    The main focus of the conference was that pain shouldn't just be "managed" by people experiencing it and the people treating it, but can actually be OVERCOME (this part made me squirmy and doubtful at first)

    It was two full days of educational presentations that used FMRI studies (areas of the brain that when they are activated "light up" in the scan) to show that when we deal with chronic pain, our brain actually changes to keep this pain loop going, until there really aren't things CAUSING the pain but our misfiring brain that gets stuck in this loop.

    They had in-depth discussions and lists of ways to change pain treatment (including using traditional methods like meds, etc) but expanded their focus to basically get at changing the ways our brains work.

    All this is based on "neuroplasticity" or the idea that neurons and our brain structures can be changed over time (changed into something that doesn't work as well- causing chronic pain- and changed into healing from those issues as well).

    They recommended a book I'm currently reading that is FASCINATING called "The Brain that Changes Itself" by Norman Doidge

    I'm not going to go into all the details from the 16 hour conference in this post .... but I'm trying to figure out the best way to convey as much of the information I learned as I can here to folks that are interested.

  2. jole

    jole Member

    I remember you...and this sounds interesting. My son brought me a video to watch on 'Tapping', which I'm thinking is based pretty much on the same principle with the info you've given. I've watched it twice now...haven't tried it...still not entirely convinced, but see how perhaps it can help.

    Maybe the reason so many of us have trouble with these ideas is because it makes our pain seem less legitimate? That's the problem I had at first. Yet I've tried so many self-help techniques only to have them not help at all, even though I've totally changed my mindset.

    At any rate, I'm interested in what you've learned and will watch for more info from you. There's nothing wrong with more knowledge, and I appreciate you sharing. If it works for one person it's worthwhile! Thanks.......Jole
    [This Message was Edited on 11/27/2010]
  3. joanierav

    joanierav Member

    im very interested. thank you for taking the time to tell us. im willing to try anything , and try to keep an open mind. i like the concept of the loop thing. it does make sense. how have to been feeling, i dont see you on chat anymore?.

    blessings for passing this info on. joanierav
  4. ellikers

    ellikers New Member

    jole: Glad you're interested! The information these folks are talking about is multi-discipline, so it's not just one technique (like tapping) they are advocating but MANY different techniques, all aimed at soothing the body/brain connection, which for people with chronic pain has basically gone haywire. I'll try to describe it better as I go along here.

    joanierav: Hey there! Yeah, I've been super sporadically here over the last 5 years since most of that time has actually been me feeling pretty good and I get busy with life stuff. I'm lucky because (a) I really have had mild forms of CFIDS and Fibro/myofascial pain (not saying those are the same thing, but my fibro and myofascial pain stuff is pretty interwound) (b) they've generally stayed mild because I've gotten pretty good medical treatment over time, and I have figured a lot of things out on my own to have stablized my body pretty dang well. Now I deal with pain flares with changes in weather, stress, sudden strenuous activity I wasn't prepared for or when I stop following my self-care routine (such as when I stop stretching as much, stop walking/hiking/running, etc).
  5. ellikers

    ellikers New Member

    Here's my first section relaying some information from the conference "Brain Embodiment: Transformational Pain Treatment" presented by Drs Marla Gordon and Michael Moshowitz. To help give credit to this information, these are very prominent Drs and researchers on pain, and this conference was hosted by the Pain Society of Oregon, with 100+ doctors and practitioners from Oregon attending the two sessions (these are the top pain practitioners in my community attending these sessions!!)

    Here is a link (I hope it works for you all!) to the hands outs and powerpoint slides they used for the presentation. There are lots of great images and TONS of info so I suggest checking it out:

    These folks are saying that chronic pain is really a problem with our central nervous systems (basically in our brain), where a feedback loop gets started and rewired and strengthened until it's repeating endlessly with essentially nothing helpful to offer. Acute pain sends us helpful messages, such as when we do something like break our leg and our brain is giving a very helpful signal "Holy bejesus my leg is REALLY HURT! Don't move it!" but THAT process is the brain is very different than chronic pain (I'll get to that later) when the messages are basically being repeated over and over but there isn't anything to DO about it.

    They are NOT talking about pain just being psychological, as if we are making our own problems for ourselves, which I've heard some awfully incompetent and disrespectful medical practitioners say. Chronic pain is a real problem and it needs real solutions and we (people with pain AND medical practitioners) need to rethink our ideas about pain and pain treatment. One of these guys (Dr. Moshowitz) is a psychiatrist and he's even NOT saying that all we need is therapy.

    First they went over a basic overview of the nervous system (which is pretty complicated and thankfully due to my own educational background I grasped all of that really easily) so I'll simplify it when I talk about it here so it hopefully makes sense to the majority of folks. Pain and the brain needs to be looked at MULTIPLE levels, along the whole central nervous system. Pain, even if we feel it in our toe, is really in our brain, because it's our brain that is perceiving the signal and is telling us "your toe hurts." "Pain is really in the brain"

    We were shown several different FMRI images, one of which was a brain in acute pain (such as a broken leg) the other was someone in chronic pain. The same areas of the brain light up (those brain cells -neurons- are firing away) but in chronic pain the areas are LARGER, in other words, over time, our brain begins to strengthen those signals because the more the neurons fire, the stronger those pathways become. That's something well known in neuroscience and is becoming more understood called "neural plasticity." Think of it this way "What's fired gets wired" what we use over and over again (whether that's a good pattern or behavior or a not so good one) that's where our brain goes more easily on automatic .... like a path through a field being created and worn down over time.

    This helps explain why folks with chronic pain become super sensitive to other sensations that otherwise would NOT hurt, but to us, they do because our brain is being wired to perceive MORE messages (even if it's just pressure) as painful (rather than just pressure).

    The areas that process pain (there are mainly 9) are involved in other stuff too (like decision making, seeing, regulating our emotions, etc) and the more the pain areas are processing pain signals, the more they start to take over the rest of those areas. In other words, the neurons firing for pain signals start recruiting other neurons NOT originally firing pain signals to fire for pain too! This helps explain why folks with chronic pain can have more trouble making decisions, reading, moving around, regulating our emotions, etc because those areas are working more at processing our pain and they start to get slower or less efficient at trying to do the OTHER stuff they are supposed to (make a decision, help us keep our balance, help us stay calm and not upset). It also explains why it's so exhausting to be in pain: our bodies spend SO MUCH ENERGY relaying these signals up and down our central nervous system.

    Okay, there is a TON more but I feel like trying to type it out in lesson sized chunks. I hope that made sense ... this is literally the introduction to help the rest of it make sense.

    Feel free to ask questions and comment! I really feel like this is groundbreaking work and everyone should have access to it.
  6. AuntTammie

    AuntTammie New Member

    thanks for sharing!
  7. ellikers

    ellikers New Member

    Okay, so here's the next installment!

    After breaking down some of the basics of how pain works in our central nervous system (ie our brain) they started focusing on the "basic rules" of neuroplasticity (changes in the brain):

    (1) What gets fired gets wired:
    The things that we do repeatedly get wired in our brains more strongly (if we are tensing up and having lots of negative mental thoughts associated with our pain, or develop certain habits that don't help our pain, those get wired in our brain and we more easily go there instead of in directions that ease our pain or think about it more proactively)

    (2) What you don't use, you lose:
    If we stop trying new things, stop trying to interrupt pain signals and stop using our bodies, our bodies and brains will continue to respond by further shutting down our abilities ... our muscles will continue locking up or loosing strength, our cognitive abilities (and anything else) will continue to get weaker, etc.

    They suggest that what we need is a paradigm shift from

    - Rescue phase: helping us deal with unbearable pain, into
    - Stabilization: helping us with a multi-modal (traditional meds, alternative strategies, nutrition, exercise, etc) to get into a better more stable place to
    - Restoration: re-balance and focus on increasing function
    - Transformative: replace pain with pleasure

    What helps create this change:
    - interrupting "inflammation soup" ... the process in our bodies that mounts against pain, and continues the pain cycle
    - helping understand that the way the pain established itself is the way to unravel it! if it took a long while to develop this way, the unraveling of it will probably take a while too
    - change the loop! change the perceptions that come up associated with the pain. connect our bodies to our brains using our senses thoughts and beliefs (to stimulate and soothe ourselves and reprogram ourselves out of pain) NOT distract but changing our attention to other things (breaking that feedback loop)

    Here's an acronym that helps:

    Motivation: Stay motivated to change the brain, even without immediate pain reduction

    Intention: Focus is on changing the brain to change the pain!

    Relentlessness: NO PAIN SPIKE GOES BY without an attempt to reduce it (develop 15-20 strategies-- more on the details that help that later!)

    Reliability: count on the brain to make positive changes

    Opportunity: change the pain from symptom to signal (recognizing that the chronic pain is not necessarily saying that something is harming us, but is just a signal that our body is sending us-- we don't have to be on guard or change something, it's just a stray signal)

    Restoration: goals are disconnecting excessive pain circuits and returning pain to normal function as an alarm to danger

    Next ..... different lists of helpful activities and things to engage each of the 5 senses and our brain to interrupt the pain cycle (things to help create a list of 15-20 things to do in response to pain spike)!!

    [This Message was Edited on 11/29/2010]
  8. ellikers

    ellikers New Member

    bumping up
  9. Mikie

    Mikie Moderator

    So much of this resonates with how I dealt with my pain. As I mentioned in another post, I thought I was distracting myself from my pain when I read, watched TV, did crossword puzzles, etc. Now, I believe those activities used parts of my brain which had been part of the pain loop.

    I originally got relief from Morphine because at the level of pain I was experiencing, I couldn't even do anything. Then, the Guai treatment helped the pain enough so that I could get off the Morphine and do more "normal" things. I think it's true that the more normal we program our brains to be, the less our brains can participate in the endless pain messages. This may explain why drugs like Lyrica, neurontin, and Klonopin help with pain; they reduce the overfiring of the neurons in the brain, helping to stop the pain messages.

    Klonopin has been a huge help in reducing my pain and other symptoms. Your post helps explain those other symptoms. If the brain is consumed by producing pain messages, it cannot screen out things which can cause sensory overload.

    One thing I found which helps with my pain is to talk to it and tell it that it's not real. I just say casually, "I know you're not real." I don't involve emotion, just observation that I know the pain isn't real in the sense that it isn't "necessary pain" to let me know of injury. Again, I'm trying to rewire my brain.

    In the movie, "What The Bleep Do We Know," there is an animated-enhanced portion which explains that our brains can get addicted to emotions. When our brains' neurons fire, there are chemicals released to which we can become addicted. I would bet that the pain signals produce such chemicals and our brains can get addicted to them as well. This may explain the pain loops. I don't know this for a fact but it makes sense.

    In any case, whatever it takes to get the brain out of this endless loop of pain messages works better than anything else I've tried. I still take meds; without my Klonopin at night, I couldn't sleep. Whatever recovery I've been lucky enough to achieve has been the result of varied treatment options. I'll try anything if it makes sense and isn't dangerous.

    Thanks again for this info.

    Love, Mikie
  10. jole

    jole Member

    I'm sorry....I read and then got busy......didn't forget about you, and would love to hear more. Some of this sounds as though it works a bit on the same principle as 'rebound headaches' The more we try to fight them off with meds, the worse they tend to get and less chance of the meds helping once we hit a certain point. I do understand the need of intervention to get things under control to the point that we can take over.

    The mirror acronym is very interesting, and I'm going to try to remember that. Now if they'd just come up with something to help the memory enough that I COULD remember that. Although I am getting really adept with writing myself Thanks again........Jole
  11. jole

    jole Member

  12. bobbycat

    bobbycat New Member

    I also read something along this line but thanks for the post
  13. ellikers

    ellikers New Member

    Sorry I have sorely neglected coming back here and writing more about my notes.

    This is still an area I'm really interested in! Finished reading "The Brain that Changes Itself" and "The Pain Chronicles" and looking for more resources to devour on the topic.

  14. Waynesrhythm

    Waynesrhythm Member

    Hi Ellikers,

    I haven't read this thread, but will try to tomorrow. Since you're looking for more "resources", I would suggest you check out "earthing". There was a recent thread here that you may find interesting. Lots of testimonials out there on how it can relieve pain and inflammation.

    Best, Wayne