Neil Pearson on Building Hope and Recovery

I know I may have mentioned this once or twice before on my blog (or in like every post), but in case you missed it: Neil Pearson‘s work changed my life.

It all started when I met a physical therapist who had studied with Neil. This physical therapist opened my eyes to a relatively new approach to chronic pain treatment, called pain neurophysiology education. Ultimately, I was so inspired by what I learned that I began to consider physical therapy as a career.

I have written a lot on these experiences, and I always urge people to watch the three online lectures, given by Neil himself, that my physical therapist insisted I watch when I first began treatment with him.

For me, these lectures have always been a springboard– I come away wanting to know more.

Well, I was poking around on the Internet last night, and stumbled across this amazing webinar, Building Hope: The way through pain to self-management and recovery.  In this Neil Pearson discusses some new ideas and approaches to treatment that I hadn’t heard before.

The webinar itself is hosted by the Canadian Institute for the Relief of Pain and Disability, a really cool organization that’s worth checking out in its own right. They have a lot of great resources, and I love their compassionate, actively pro-patient stance. (Obviously, every organization tries to be “pro-patient,” but CIRPD really seems to get it right).

Here are some of the key points I’m taking away from this webinar:

1) Neuroplasticity means the nervous system can be changed, and if it can be changed one way (as in the case of chronic pain/central sensitization), it’s also possible to change it back.

2) Even just visualizing movement can help the nervous system inhibit its own pain signals. Research has established that exercise is a great way to stimulate your body’s own internal pain controls, but when the movement itself creates more pain, it can be counterproductive.

That is the beauty of just visualizing movement. As far as your brain is concerned, visualizing a movement is very, very similar to actually performing it.

As Neil explains at the 17:10 mark, visualization can actually help to stimulate the nervous system to inhibit pain. Over time, after you let your nervous system “practice” moving through visualization, you may find you have less pain when you actually go to move.

I think this is seriously SO cool. I can’t even find the words. It’s things like this that really inspire me to become a PT, and help people living with pain. (My takeaway: I want more information on this right now!!!).

3) You can help the nervous system block out pain signals by distracting it and giving it other information to process. You can use touch, or movement– even if it’s very very small movement.

4) Repetitive, rhythmic movements in particular can help to calm the nervous system by giving it something else to focus on other than pain. Rhythmic movements such as walking, breathing or even rhythmic gum chewing (what?!) have been shown to release more serotonin and help control pain.

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I just honestly can’t even tell you how inspiring I find all this stuff.

I am fortunate that, right now, I am mostly able to move without significant pain. (Due to my SI joint concerns, I do have to be cautious).

But it’s nothing like the place I used to be in. I can remember a time in my own life when even thinking about moving was terrifying. I just felt truly stuck– like my body was a jail.

I can also think of people I’ve met– through blogging, reading stories, as well as the patients I’ve met while shadowing physical therapists– who are in equally as much pain, and seem to be trapped within their bodies.

These are people who, through no fault of their own, are in too much pain to move. It’s not that they’re lazy; it’s not that they’re depressed. It’s not that they don’t want to get better.

It’s just the way the deck was stacked; the way the cookie crumbled.

They are in too much pain; their injuries are too great; their nervous systems too sensitized. Perhaps they are obese; perhaps there are multiple health conditions going on.

Whatever the reason– it is so amazing to know that there is a way to begin to help them, without requiring them to move before they are ready.

I want to help those people. I want to be that physical therapist that comes in and helps the hard cases, the ones other medical professionals may have secretly labeled impossible. I want to sit with those people, and look them in the eye, and tell them that there is a way out of this.

***

I hope that you enjoy the video, and that you will also check out more from CIRPD and Neil Pearson. The webinar was also co-sponsored by the Canadian Pain Coalition and Pain BC— two additional groups with a lot to offer (why does Canada have all the cool organizations?). I could say more about how cool they are… but that will have to wait for another post.

I hope you are as inspired as I am! As always, don’t hesitate to let me know what you think!

Sense of Place

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Ironically, I have a feeling this is going to be somewhat of a meandering post… because I have a lot of thoughts I want to share on the topic of staying in place.

I moved somewhat recently (last spring) after living with family for several years. I didn’t move far (still in the suburbs of Boston, only closer to the city now).

However, it’s been a time of big change for me, because I’ve been trying to figure out how to do a lot more things for myself rather than relying on my family. This is true of things that everyone has to learn to deal with at some point (for example, putting my own furniture together; installing my own curtain rod). Just those boring, annoying adult things.

For me, there is an added layer of difficulty, because of my sacroiliac joint issues. As I’ve mentioned in previous posts, I am doing better than I was a few years ago, but I know from past experience that times of change are when I’m more likely to inadvertently push myself too far, and have a setback. It takes time to adapt to a new place, to a new routine; to figure out what works for me, and what I should avoid.

It’s been my grand experiment. It hasn’t always been pretty.

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One of the questions I’ve asked myself is, what is family? For so long, I relied on my family members for help, assuming they were the only ones who would be willing to help me with the kinds of favors most people don’t have to ask for.

My friends knew about my struggles, but I mostly tried to avoid asking for help, except for the times when it couldn’t be avoided.

However, I am not a scared and confused 20-year-old anymore. I am 30. (And no, 30 is not old. I feel amazing, and so excited about the future!). But it’s time to start branching out– to find new ways to do things, and new ways to relate to the people in my life.

Can friends be family? Or, in other words, can I redefine my relationships with my friends, and come to count on them the way I have counted on my family?

I definitely have not done it perfectly. It’s been a learning experience.

***

Something I’ve learned is how far people will go out of their way to avoid hurting your feelings. They’ll do things that ultimately hurt you more– they’ll talk behind your back, they’ll plan a trip that involves a lot of walking, and won’t invite you– anything other than tell you to your face.

I’ve had to get better at reading between the lines. I’ve found it to be helpful if I can just take a guess at what might be wrong and offer an apology, even if the person insists everything is fine. I’ve had to get better at clearing the air; at addressing the problem as promptly as I can rather than letting it fester.

Things get awkward sometimes, because I can’t always repay a favor the way people would normally expect. For example, if one of my friends comes over and helps me carry my new mattress inside, I can’t go over the next week and help her move her couch. I have to find another way to contribute to the relationship.

Obviously, people do things out of the goodness of their hearts. It’s not as though, the very first time someone does me a favor, they expect something in return.

But over time, it’s important to show that you are also willing to help, and how much you care. There have been times where I thought I was doing a good job of this, only to realize that in some cases, my efforts weren’t really noticed.

It’s been frustrating for me, because the truth is that I put a lot of time and dedication into my friendships– to be there for people, to listen to them. I’ve come to find out the hard way that this effort isn’t always recognized.

I think it’s partly because listening comes so naturally to me. I actually love sitting down with people and sorting out their problems (it’s why, when I was in college, I wanted to be a psychotherapist). Because I enjoy it so much, and (let’s face it) I’m good at it, people don’t always realize that it can be excruciatingly hard work at the same time.

So, I’ve had to learn how to communicate better. To let people know how and when I am putting in effort, because they don’t always see it on their own. It’s all about being open, honest, and direct, while maintaining a non-confrontational stance.

What I’ve learned is that you can redefine your relationships with people. You can become closer to people, and ask more of them. But you have to be willing to put in more effort yourself– and to be prepared for people not to notice it, especially if it’s not in a form they’d expect. When that happens, you’ll need to find a graceful way to point it out.

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Although this post is about people more than it is than geographic location, “Sense of Place” is the only title that makes sense to me. After all, it’s other people that form so much of our sense of place– the feeling that we belong, the knowledge that we will be okay.

But I do love the area I moved to– I am somehow still surrounded by conservation land, trails, and parks, am yet much closer to the city than I used to be. I love it– the hustle and bustle of life around me, yet against a backdrop of so much natural beauty.

As I’ve mentioned previously, over the course of the past few years that I haven’t been able to run, I’ve learned to find peace in standing still. So, over the past few months, when I’ve felt overwhelmed, I’ve turned to the natural beauty around me, and drunk it in.

When things haven’t gone my way, when I’ve felt that my “sense of place” in the personal sense was still under construction, I’ve always had my internal connection to the natural world, and that has been my anchor.

It took a while– to learn the area, to feel at home, to re-evaluate my connections with the other people in my life. It’s a work in progress, but it’s working out.

 

 

What is central sensitization?

Central sensitization: the back story to just about every story I tell on this blog. I’ve written the phrase a million times, but always in passing, always with a link to an article somewhere else. I think it’s high time the topic gets its own post.

Practice Makes Perfect

We’ve all heard the phrase “practice makes perfect,” right? When you want to get better at something, you practice. Want to learn how to play the piano? Practice. Want to learn how to ride a bike? Practice.

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Photo: t.spang

Our nervous systems are always changing and growing, in response to the things we do. Our brains form new connections all the time.

This is how we learn how to control our fingers, and move them more quickly and in more complicated patterns, when we practice the piano. It’s how we learn to balance when riding a bike. It becomes second nature.

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Photo: Alan Levine

Unfortunately, the same thing can happen when you give your nervous system enough changes to “practice” sending pain signals.

It sounds crazy, but basically, our nervous systems get better at sending these signals. It doesn’t happen automatically– you won’t develop central sensitization if you stub your toe, or get stung by a bee.

But it can happen if the pain goes on for long enough. For example, central sensitization can happen to someone who’s hurt their back, and has been in pain for a few months. The nervous system has been sending these pain signals over and over again, and now– just as if the person had been practicing the piano for a few months– the task has gotten easier.

Central sensitization can also occur in someone who has suffered a larger degree of physical trauma in a shorter time period. For example, it can happen to someone who’s had surgery– even if they were under anesthesia at the time.  Consciousness isn’t required for central senstization to occur.

This is because central sensitization involves nerves, your spinal cord, and the parts of your brain that process pain without conscious thought. They are still learning how to process all those pain signals, even if you are under anesthesia. (Of course, I’m not saying this will happen to everyone who has surgery. It is, however, a possibility).

In a nutshell, central sensitization means the central nervous system becomes more sensitive.

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Photo: Maryl Gonzalez

There are many different ways in which central sensitization can manifest itself– the symptoms are not always the same from person to person.

The differences have to do with the person’s individual genetic makeup, what the original illness or injury was, and other health issues the person may have. (And yes– the person’s beliefs and perspective on pain can have an impact on how they respond to central sensitization, but they do not cause it. More on this later– I have very strong feelings on the subject!).

Invisible Illness

Scientific research has shown that central sensitization tends to be present in patients suffering from many of the conditions people generally refer to when they talk about “invisible illness.” These conditions include fibromyalgia, chronic regional pain syndrome, migraine, temporal-mandibular joint disorder, chronic pelvic pain, and irritable bowel syndrome.

Sometimes central sensitization is the root of the problem: for example, researchers now generally believe it to be the cause of fibromyalgia (please, please don’t believe the other things you read!).

In other cases, central sensitization is one of several contributing factors (still playing an important role, however). This is more likely to be the case in conditions such as irritable bowel syndrome, which can also be influenced by food intolerances/imbalances in gut bacteria, and temporal-mandibular joint disorder, which involves the physical pathology of the joint. In these cases, central sensitization perpetuates the problem and causes additional pain and discomfort, but is not necessarily the primary cause.

The Common Link

Because central sensitization is the common cause, it makes sense that so many patients with fibromyalgia also suffer from other “invisible illnesses.” For example, studies have shown that significant numbers of fibromyalgia sufferers also have irritable bowel syndrome.

I have so much more to say on this topic– more research to tell you about, the history of how it was discovered, as well as my own personal stories.

But…. as I have to keep reminding myself, I’m writing a blog, not a textbook… so all of that will have to come in future posts!

Citations:

I think it’s important to always post links to scientifically-valid articles when I talk about scientific/medical concepts.

Here is a great plain-English overview on central sensitization, written by Christina Lasich, M.D., for HealthCentral.net.

Next, an incredible overview of the science on central sensitization from Paul Ingraham of PainScience.com, which is an amazing website.

Ingraham’s article is actually a “jargon-to-English” summary of this important review of the scientific literature on central sensitization written by Clifford Woolf, the researcher who first discovered central sensitization back in 1983.

Finally, check out this equally important article from Muhammad Yunus, who has done vital work exploring the common links between central sensitization and the invisible illnesses (he calls them central sensitivity syndromes in this article).

I realize that the average reader might not be able to understand all of the scientific terms in these articles (I know I struggle), but I want you to know that legitimate and credible information is out there, and this is what it looks like.

A Note to My Readers:

I am always happy to answer any questions that you might have.  I think that all of this information is so important for us to be aware of as chronic pain sufferers!  It can really be life-changing, once you start to truly understand the roots of your condition.

I am always so curious to know what you think! Did you already know that central sensitization is believed to be the cause of fibromyalgia?  Does the common link between fibro and other invisible illnesses make sense to you? Let me know!

An Update on my Sacroiliac Joint Saga, Part 2

Update, Jan. 2018:  Hi everyone– I’ve learned a ton since I wrote this post.  Be sure to check out my other site, My Sacroiliac Joint Saga

And now, the original post:

In Part 1 of this series, I explained how the learning the “muscle energy technique” from my physical therapist Paula marked a turning point for me in my SI joint journey.

Above, I’m including a Youtube video of a physical therapist demonstrating this technique.  (I actually use a few different variations on the moves she does, but the principles behind it are exactly the same).

By using this approach regularly, I’ve not only been able to keep my SI joints better aligned, I’ve also developed more of an understanding of how the pain and sensations I feel correspond to the anatomical reality of what’s actually happening down there.

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For me, this whole process has had to be very intellectual.  The movement patterns of the sacroiliac joints are some of the most complex in the body.  It wasn’t a matter of simply doing my exercises and getting stronger, because this joint is like a puzzle.

The SI joint reminds me of those old metal “tavern puzzles” they made in the Colonial days (http://www.tavernpuzzle.com/).  I don’t know if most of you would have ever seen one—I grew up in a town with a lot of Revolutionary War history, so I feel like I grew up playing with these things.

They are impossible to figure out by just looking—they’re too complex.  Instead you have to just start moving the different parts around, hoping the solution somehow becomes clear as you go along.  Half of the time, you move a piece and realize it actually just made things worse.

That’s been my experience with the SI joint.  It’s been so unpredictable, the things that will cause my SI’s to “slip” and lock. Walking on a flat, well-maintained trail at my favorite conservation land?  No big deal.  Going to a party and sitting on someone’s dilapidated old couch?  I sink in instantly, and my hips are locked again.

It doesn’t help that everyone’s SI joints are different.  Obviously we all have the same bones down there, but the shape of these bones and the way they fit together can vary widely from person to person.

For this reason, things that can work well for one person might not work at all for another.  I’ve tried techniques and exercises that other people have sworn by, and found they made me worse.

Only by learning, and developing a sense for exactly which types of motions and textures are going to create instability in my pelvis, have I been able to make sense of my own SI joints at all.

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What about mind over matter? a lot of people have asked me.  Why can’t you just push through it, even if it hurts?

What I wish they could see is that it has been mind over matter, just not in the way they think.

There’s no pushing through an SI joint that has locked.  Anyone who’s experienced this will know what I mean.  It makes about as much sense as trying to use brute strength to unlock one of those tavern puzzles.

But you can use your mind to learn about the anatomy of the joint, and solve the puzzle that way.  Technically it’s still mind over matter, but in this variation it’s about being open, receptive, and mindful, rather than trying to harness sheer force of will.

To be continued in Part 3!

 

My saga with the sacroiliac joint

Update, Jan. 2018:  Hi everyone– I’ve learned a ton since I wrote this post.  Please be sure to check out my other site, My Sacroiliac Joint Saga, for more! 

And now, the original post:

So, let me start out by saying that I feel totally crazy writing some of this.

Most of what I write about has a good deal of scientific research to back it up. I take this very seriously, because the internet can be a such cesspool of conspiracy theory and misinformation.  The last thing I would ever want to do is be the kind of blogger who adds to that.

But I don’t really have many scientific facts to back up this post with. And it’s not for lack of trying.

Since this ordeal has started, I’ve seen one orthopedist, five physical therapists, and two physiatrists (the word is confusing, but their specialty is Physical Medicine & Rehabilitation, not Psychiatry).

I’ve also spent a long time trying to find information about the sacroiliac joint online. Google searches turn up next to nothing. And searching the publicly accessible scientific databases such as the National Institutes of Health only turns up articles about people who seem to have different problems than me.

So I’m just going to write this based on my own experience.

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This post picks up after where I left off in “How a physical therapist helped me through my lowest point, Part 8.”  In that post, I talked about how I was developing chondromalacia patella in my right knee, and that it was made worse by the fact that my physical therapist told me the pain wasn’t significant and that I could try to ignore it.

After a few months, things had gone from bad to worse and I was limping almost all of the time.

And, after weeks of limping, came the first time one of my sacroiliac joints locked up.

I was walking along, just minding my own business, when I felt this strange sinking feeling in the back of my left hip. The sinking didn’t hurt, but it was followed immediately by a “catching.” And the catching did hurt.

And once whatever it was that was caught had caught, I could barely lift my leg. Like, I could barely get it off the ground high enough to put it down in front of me. Going up stairs normally, even small ones, was out of the question, because I literally could not get my left leg high enough to place it on the next step, let alone put any weight on it once it was up there.

I had been seeing a chiropractor for a while at that point, because all the exercises I’d been doing in PT had made my lower back to start to hurt.

I went in that day, and he told me right away that it was my sacroiliac joint. I’d only heard of this joint in passing before—just one more word on the diagram in my anatomy and physiology class. It hadn’t even seemed like an important enough joint for us to talk about it at all in class.

It didn’t take him much time at all to click away with his activator and get the joint to fall back into place. I was able to walk out of the office normally, although it was a day or two before I was brave enough to try using that leg normally on stairs.

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A few weeks later, the same thing happened on the right side. I was getting ready for a quick chiropractor visit before I had to drive to class that night when I experienced the same sinking and catching feeling. I felt as though I had a stilt under one leg, although which leg felt like it had the stilt under it kept changing.

I rushed off to the chiropractor, only to have the secretary tell me he was running late. I realized I didn’t have time to wait for him and still make it to class in time, so I burst into tears in the waiting room. It was pretty embarrassing.

Luckily, he came out from the treatment room he’d been in and saw me in tears, so he fit me in.

***

This was the beginning of the absolutely crazy pattern I’ve been caught in for the past few years.

I feel crazy, because I’ve fallen into the exact kind of trap that so many people with chronic health problems fall into, and it usually isn’t productive.

I’ve come to count on one type of health professional to help me—and it’s not one that is generally well-respected by mainstream medicine. And I’m not getting the same explanation from him that I’ve gotten from all the others.

But in this case, the thing is… I didn’t really get an explanation at all from any of the others.

And I don’t feel like I was asking them anything super outlandish. Again, this is a joint you’ll find on a basic diagram of the skeletal system. Like, anatomy 101.

I wasn’t asking them to give me their opinion on specific acupuncture points, or the merits of reflexology. This joint is something they’re supposed to be able to help people with.

But it seems like most of the literature and treatments that I found in my attempts to find scientific information with have to do with a sacroiliac joint that is painful. Or inflamed. Or “unstable,” which is the term that means the ligaments that are supposed to hold it in place are too stretched out to do their job.

I couldn’t find anything about what to when the sacroiliac joint becomes stuck.

The ilium, which is the very back of the hip bone, is supposed to line up perfectly evenly with the sacrum, which is the base of your spine. In my case, assuming my chiropractor is correct, my ilium is getting stuck too far back, behind the sacrum.

All of the papers I read, after describing problems that I didn’t sound like mine, concluded with the phrase “further research is needed.”  It was clear that the authors didn’t feel like their results were definitive enough to make a clear pronouncement about the sacroiliac joint, one way or another.

***

I’ve spent so much time living with this problem, I can feel it the second my SI joint starts to lock up.

Once in a while it will turn out to be a false alarm– I’ll move in a way that sets off the old familiar pain, and I’ll freak out, but an hour, I’m still able to walk normally.

But all too often, it’s not a false alarm– I feel the catching sensation, and then no matter what I do, I’ll be limping for days, until I finally give up and go back to the chiropractor.

***

So this is the trap I’m in. I still go to a chiropractor several times a month.  Once my hip has become caught in that peculiar way, a chiropractic adjustment is the only thing I’ve found that can make it become unstuck.

Meanwhile, I’m reading all these other blogs by people I really respect, who’ve turned out to be right about a lot of other things, who all say that chiropractors are at best misguided, and at worst, con artists.

I’m still waiting to find out that I’ve been completely wrong about the whole thing. That maybe my chiropractor was wrong, and that I didn’t feel exactly what I’ve been feeling.

That maybe the “sticking” feeling isn’t always coming from the joint itself.  That maybe my muscles are just tight, and something about the chiropractic adjustment is loosening them.

That’s why, from time to time, I check in with other medical professionals. But surprisingly, none of the people I saw told me to stay away from chiropractors. Both of the physiatrists I saw actually expressed admiration for someone who had enough expertise to be able to manipulate a joint that was, to them, still quite mysterious.

***

The only helpful article I’ve found about the sacroiliac joint, EVER, is this one by Roger Cole.

He explains that in many people, the sacroiliac joint becomes fused as they age. This is particularly true for men, starting around age 30. By 50, almost all men’s sacroiliac joints have become fused.

This means that the two bones, the sacrum and the ilium, fuse and become one bone.  The joint no longer moves at all.

But in women, particularly younger women, as well as people who’ve retained a lot of flexibility through yoga (which, he points out, might not actually be a good thing) this joint tends to remain unfused.

This is one reason why the medical profession might not have a good handle on this joint. Up until recently, it was pretty much only men studying anatomy, contributing to medical textbooks, and practicing medicine. And by the time they’ve actually become successful doctors and surgeons, these men’s own sacroiliac joints have completely fused.

And even for women like me, it seems like most of us need to have some kind of precipitating event to have issues with this joint.   My web research tells me, at least anecdotally, that it seems to most commonly affect women during and after pregnancy.

I don’t think any of my readers will be too surprised that a problem that disproportionately affects women might not have received enough attention from the medical establishment.

***

So basically, my plan now is just get stronger.

It’s actually my main chiropractor, Dr. K., who first convinced me to join a pool and stop working out land.

For months, after I had first come to him with a locked up sacroiliac joint, he started telling me that getting stronger would be the only way I’d get better, and stop this problem from happening.

I had all kinds of reasons why I didn’t want to join a pool, but in retrospect, this problem would not have gone on for nearly as long if I’d just stopped the land exercise and joined a pool the minute my knees started hurting.

So for those who are inclined to think of chiropractors as con artists, Dr. K. really got on my case about joining a pool.  He made it clear to me that his adjustments would only help in the short-term, but in the long run I was going to have to get stronger.  And that the only way he saw me doing that was in water.

Over time, he got progressively more emphatic:

“Just go online and see what gyms around here have pools.”

“Just make one phone call about joining.”

“Just go in person and check out one pool.”

Finally I did, and I’m still kicking myself (or I would be, if my joints could move) for not doing it sooner.

***

Since I’ve been working out in water for about a year and a half now, I am a million times better.  I haven’t completely stopped my SI joints from “sticking,” but now that I am stronger, they don’t “stick” quite as badly.  It also just doesn’t bother me quite as much when they do, because I have more strength in other areas of my body to compensate with.

So I am not out of the woods yet, but at least I feel like I am learning.

As I’ve promised in previous posts, I plan to be writing more about the specifics of my exercise program, as well as the exercise science concepts that I think are really useful for anyone with chronic pain and biomechanical dysfunction.

Stay tuned!

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Again, this is an old post!  I’ve come a long way since I wrote this, and have so much more to say!  Please be sure to check out My Sacroiliac Joint Saga for more. 

Update #2, July 2018: I’ve just created a Sacroiliac Joint Discussion Group on Facebook.   This is a place to connect with other readers, ask questions, and share ideas.  Hope to see you there!