I’m now attending a weekly meeting of fellow pain patients in the area. It’s very good. A few things came up which I felt confident to share with the group and am now sharing with you, because the body of info is so useful… even if it’s only connected “under the hood.”
Pain care in the western New England region
Here are the local resources I can (to some degree) recommend. Those of you from other states and regions, please feel free to make recommendations in the comments! 🙂
Baystate Pain Management
There’s a Pain Management Center in Greenfield, MA, which I never knew about. It describes itself as “interventional”, meaning their focus is on procedures and injections and the like. (This means they aren’t currently doing much with the material mentioned in the Readings heading, but that may change in time.) They also provide PT and acupuncture, the latter only at the Springfield site. https://www.baystatehealth.org/services/pain-management-center
The Springfield site is the old home of a doctor I’ve mentioned before and don’t want to mention again. I noticed they don’t list staff on their current web page, but I do intend to follow up and learn a bit more about their current practitioners.
Real Pain Diagnosis
My doc, Lloyd Saberski, is intellectually conservative, and will do nothing that has a fair chance of hurting the patient. (Since I tend to be more gung-ho, I consider his approach a necessary complement to mine.)
There are a couple of other specialties (stem cell treatment and a weight-loss thingy) attached to the clinic, which is probably how they stay in business despite putting something as rare, time-intensive, & low-paying as advanced pain diagnosis at the center of the practice. I have never had the least hint of being nudged towards either of those; rather, Dr. Saberski specifically mentioned once that stem-cell treatment was still an immature modality with only a few conditions it was proven for, and that it would be totally unsuitable for me. Despite my poundage, he has never mentioned weight-loss, not even with a glance.
Readings on brain plasticity, with guidance on pushing back
I consider this the best lowdown on trauma gets put in place into the brain & body (and why this shows that Worker’s Comp and the insurance industry are specifically trying to destroy us, so don’t buy their evil story about you): “The Body Keeps the Score” by Bessel van der Kolk
It’s pretty science-y, so feel free to start with other authors like Pat Ogden or those listed below.
Other authors I can recommend are…
He’s a doc who developed central pain in himself, realized the current medicine on it was, um, let’s call it ill-informed, and eventually turned his extensive study on the subject into accessible material for the rest of us. He’s a good story-teller with an eye for the compelling detail that makes his point. He has two books out, both of them excellent, informative, and inspiring, avoiding all the usual pitfalls of physicians who like to write. He stays on topic, refers to the science, defers to the patient’s experience, and each side-trip turns out to be relevant and interesting.
I now mentally push my pain back up my spine and squish down on the pain regions in my brain every time I think of it 🙂 Week 2 — 4 more to go! Read more from him to understand what that’s about.
Credited with developing one of the most-recognized techniques (called EMDR) for accessing the neurobiology of distress and reprogramming the mind/body response to it. Some of her work is very clinical, and some of it is designed for anyone to pick up and use for themselves. Be aware that EMDR techniques tend to be multi-stage processes, and the “at home” techniques involve a little advance work to set up your mental safety-net. (I did that during my designated meditation time, which I use for any solitary mental healing work.) With that done, you have a lot of options later for catching yourself and quickly restoring your ability to cope.
An outstandingly practical person with tremendous insight and depth, she is one of the founders & leaders in the field of understanding how ghastly experiences interact with the brain, and how the individual can get consciously involved and get back in control of these systems.
Note: These last two skillful practitioners produce, not only video clips and their defining books, but also accessible articles, textbooks, narratives, and workbooks for both professionals and patients. This provides many ways to get into their information, whatever your sensory learning mode and attention span, so you can see what works for you.
A lucid speaker and explainer with many videos and a couple of books, especially (but not exclusively) for brain-science nerds. He co-authored several additional books that turn his theory into practical tools and techniques to use in real life. He focuses on hot issues for painiacs and those who love us: re-training our brains to identify and embrace the feeling of safety, developing healthy relationships in spite of twitchy brain responses, and re-developing our neurological coordination so we can get back in charge of ourselves.
Multiple access-points to get to the same root issues of healing our neurobiology
These brilliant practitioners have come up with different ways to access and engage with our natural neurobiological wiring, in order to manage our own brain and body responses better. Many of them focus on trauma recovery rather than the ongoing disruption of central pain etc, but, where that’s the case, I mentally edit for ongoing “trauma” (which ongoing pain is, strictly speaking), and I find considerable insight and useful techniques there. Great stuff. Also, if you’ve had awful things happen in your life, you may find a useful healing approach in one or more of their works.
Resources & info in this blog
I’ve been keeping a blog for ~9 years, though the earlier years got lost in a move. (Just as well; I was flailing.) Questions I could probably bore you to tears answering in person…
As I say elsewhere in this blog, it’s a bit of work to generate the first set of documents, but maintaining them is easy, and the payoff in personal poise and doctor response is tremendous.
Why is sitting in a moving car for hours so rotten?
Oh, boy, let me tell you what I’ve found about this! I think of it as 4 main issues, each of which I’ve developed ways to mitigate for my own case:
Our skin (where all those peripheral nerve sensors hang out) is hardly moving and half of it is pretty much unable to breathe, due to the mechanical pressure of our limbs against our bodies and the seat against our backs & thighs.
Hungry skin, with cellular & intestinal metabolic waste building up, no way to flush itself, with unhappy sensors, makes for serious discomfort.
I find a good song and dance & gently gyrate in my seat :))
Believe it or not, cars (especially American cars, sadly) are made of plastics that release molecules, which is called outgasing. Most plastics (including fabrics) outgas, meaning that molecules evaporate off the surface and escape into the atmosphere. These aren’t body-friendly molecules. Variously, they may interfere with endocrine (hormones) and aprocrine (sweating) activity. Many are neurotoxic, capable (depending on individual factors) of reducing impulse control, spiking irritation, and triggering emotional and physical pain. (Many of the studies around this have disappeared from the web, which somehow doesn’t surprise me. Sigh.) This lessens as cars age, but doesn’t go away as long as there is plastic, car fabric, foam, treated leather, varnish, etc, in the car.
The vehicle itself compounds all the skin stuff, and adds a constant low-dose exposure to neurotoxins.
Even in cold weather, I roll down all the windows every hour or so and purge the air in the car.
Our joints are not able to move much. The position, with the hips rotated slightly back, the shoulders reflexively rolled slightly forward to compensate, and not much room to do otherwise, is an unnatural position to be strapped into. It reduces ordinary motion, CSF/lymphatic flow, and nerve transmission, especially through the hips and spine. Our joints carry a lot of sensors, including those for blood pressure and balance; having them stuck in one position (while we’re breathing outgas, of course) makes the sensors unhappy, contributing to that general sense of yucky unpleasantness.
Unhealthy stasis in the joints, spine, and circulating body fluids, including CSF, lymph, and blood. This contributes to a central (brain & spine based) body-unhappiness.
When I’m driving alone, I stop every hour and, at least, stretch and move until I feel okay, or do t’ai chi/qi gong/yoga if I feel safe enough. When I’m being driven, we stop every 1-1/2 to 1-3/4 of an hour. We usually stop for 20-30 minutes, unless we’re in a real hurry, in which case it’s 15. I don’t tolerate less.
Mitigation bonus: stopping this often means I can get potty breaks, making it easier to stay hydrated and up on my electrolytes — which makes everything more bearable and significantly reduces recovery time.
For many of us, vibration is a problem. It certainly stimulates the nervous system, especially in the spine and feet, and wherever you’re touching the structure of the car.
Whether vibration itself is obnoxious or not, car vibration is irregularly irregular, having no consistent pattern whatsoever. This means my brain/body has no chance of anticipating or compensating for the rhythm of it, putting my body in a constant state of jolt. I find it exhausting, and it pushes up my dysautonomia as well as my pain.
Central stimulation in a relentlessly irregular vibrating pattern can be really harsh.
I adapted the inside of my car to reduce my exposure to seat outgas, improve airflow to my skin, and cut steering wheel and seat vibration to manageable levels. I also chose my car carefully to get maximum smoothness & good shocks in the first place.
Nothing, but nothing, stabilizes and improves brain chemistry like activity and good air. Having…
- all this gradual build-up of normal cellular & metabolic toxins,
- PLUS the special added loads from the car itself,
- WITH inadequate activity to move things along,
- AND this forced posture we’re strapped into allowing for even less movement,
…adds up to most of the reasons why long hours in the car are SO hard on those of us with over-challenged systems already.