O Bendy Gymster: I am the Puppet Master

I haven’t been having a wonderful time with my workouts lately. There have been numerous interruptions – hormonal crap (which results in debilitating pain), piriformis syndrome (where your piriformis muscles get inflamed and then press on your sciatic nerve, causing your hip to buckle), and so forth and so on. This means that when I do manage to drag myself to the gym or to the trail, I feel sluggish and reluctant, and I can’t do what I used to be able to do. This is profoundly discouraging and disappointing. I admit that sometimes I just want to cry. (I work so hard and I’m back to square one! AGAIN.)

(note: one comforting thing is that square one has moved. Square one is now “I can only manage running 3kms instead of 9kms” when once square one was “I am allowed to run for fifteen seconds at a time.”)

When I don’t work out, I get problems. This is the source of my common flippant claim: “I work out so that I don’t fall over.” It’s a shorthand summary of the truth.

I took about a week off from any physical activity due to Crohn’s pain issues. I almost never do this. The end result was that my nervous system forgot how to map a bunch of my core muscles.

This is the part of hypermobility syndrome that’s really hard to explain, but it’s crucial to the whole system. I’ll summarise.

HMS (or Ehler’s Danlos Syndrome, depending on the categorisation) is a genetic defect in collagen production. For some people, it is fairly benign, and for others it is debilitating. What this means in broad terms is that the ligaments that whole your joints in place, making sure that the fulcrum of the lever operates appropriately, are… pretty shit at their job. If you think of your joints as levers, which they absolutely are, HMS/EDS is about having fulcrums (fulcra?) that don’t stay put. They shift. So much power is lost. I have pretty well-developed musculature (if I flex, you can see I have abs, and my body fat percentage is high enough that this shouldn’t be possible), but so much of the power of those muscles is lost simply because my levers are so bad. So much of the muscle is busy just trying to hold steady (it’s probably why they’re so buff, actually. Standing up is working them pretty hard).


I’m lucky in that most of my problematic joint sockets are actually quite deep, which compensates a bit for this problem. There’s only so far my joints can move, because of the bone construction. I have a ridiculous range of motion for some things, but am limited in others. This is a good thing!

The other silver lining in my case is that – because of the coordination issue (which I’m getting to, trust me) – I was a sedentary kid. I didn’t work out. I didn’t exercise. There’s a whole story there about toxic sporting kid culture that is very important to me, but the upshot is that, unlike most people, by the time I found out I was hypermobile (mid-late twenties), I didn’t have two decades worth of heavy impact activity and resulting connective tissue damage. I had a relatively clean slate for a hypermobile person getting into maintenance physiotherapy.

So, to recap: I don’t get dislocations because my bones are helpful. I do get subluxation, which is partial dislocation, and joints moving at the wrong angle and rubbing at the wrong part of the joint. This leads to inflammation, pain and weakness.

Here’s the clever bit, and why physiotherapy helps: if you maintain good muscle tone and tightness, the muscle can actually help support those joints and hold them in place. The downside is that my lower back is always tight, because it’s holding my spine in place. The joints I’m talking about include vertebrae. I can actually over-stretch, because if I loosen those tight muscles, my vertebrae move about very slightly, but enough to cause the above inflammation. By contrast, I do get overtightness in other muscles that I do actually have to stretch – calves, glutes, and the muscle across your chest (I think it might actually be the pecs, feels like a steel cable when I don’t stretch it enough).

Muscle tone (technically: tonus) and strength sticks around for a little while if you don’t work out, but the tightness (that feeling you get after you work a muscle group really hard, which I have to do all the time) loosens fairly quickly.

Meanwhile, you start to lose that extra kinetic feedback.

In order to maintain muscle tightness and tone, you need to be able to activate those muscles. One of the problems with HMS/EDS is that you get reduced kinetic feedback. The human nervous system just didn’t evolve to deal with the enhanced range of motion; there are also autonomic dysfunction symptoms (my feet are ALWAYS cold, it’s like Reynaud’s in that way); and to be fair, the way you learn to move when you have EDS is different from how most people move. You tend to use the wrong muscles to compensate for the angles at which you’re moving your joints, and that means that the right muscles don’t get mapped properly to your brain.

As they say, nerves that fire together, wire together, and the relevant nerves just don’t get to fire.

This is basically an issue of proprioception. I essentially don’t know where I am in space most of the time and I don’t know where my muscles are.

So a big part of my physiotherapy is what we call muscle activation: it’s teaching my nervous system to fucking find the relevant muscles, and map to them. Our brains are extremely plastic in this way, so it does work, but it is hard work. I can’t tell you how many times I’ve been lying on a gym mat, trying to convince my glutes to fire and move my thighs in a clam motion. I can use the wrong muscles to mimic the movement, but the exact, correct movement require a muscle that has gone to sleep.

“Just… fire, damn it.”

The muscles that I often can’t find:

  • Glutes
  • Piriformis
  • Various core and abdominal muscles, including transverse and lateral
  • Some weird supportive muscles in my mid and upper back I don’t know the name of

When these muscles are active, when I’ve mapped to them, I feel glorious. I walk like a standard functioning human being. In order to achieve this, I not only have to do my regular physiotherapy exercises, but I also have to do a regular weights regime, clinical Pilates, and running, and lots of walking.

When I don’t do this work, my muscles lose tightness, and my brain literally forgets how to find the muscles. It does come back faster after the first few times, but here’s what it feels like when I forget.

My body feels like a stranger to me. I feel like I don’t fit inside it. It hurts to walk. It is exhausting to do most things (because using the wrong muscles is tremendously inefficient).

I feel like I am operating a badly-designed puppet, and it’s not even mine, it’s a puppet someone left at my house.

When I’m trying to wake it all up again, re-map the system, I go up stairs slowly. I place my foot, make sure it’s straight, and I twist my hip slightly, and push. My legs are twisted because of the way I’ve walked for most of my life and the way the muscles have developed. My instinctive internal rotation is ridiculous, particularly on my right side (which not coincedentally is the side where the piriformis syndrome is worst, and where the hip spasms and collapses underneath me).

I have actually given up on bench press – my favourite lift and the only one of the “big three” that my body can handle – because I can’t map well enough to set my right shoulder. It’s loose.

It’s not all bad news. I made a wonderful discovery recently!

I’ve recently taken up rock climbing, and it turns out that rock climbing encourages the sort of whole-body muscle activation that short-cuts a lot of this work for me. It’s not quite so useful for the legs (at least in this aspect – it is still a workout for the legs), but for my upper back, it is wonderful. A couple of hours at the indoor rock climbing gym is worth a week of rows and face-pulls. I basically reset my loose shoulder in one visit. And it’s fun, super-fun.

As I’m writing this, I’ve just come down with a cold, so workouts will be minimal. I try to balance my need for activation against my desire to not infect the local population with my plague. There is a fair bit I can do at home, so I’ll work on that.

I’m working on re-mapping my body right now. It’s hard work. What I need to accept is that I’ll get back, and I’ll fall down, many times for the rest of my life. I’ll end up back at square one so many times, and I’m accumulating connective tissue damage around my joints that will follow me forever.

But the alternative is to not move, to not use my body, and that’s not something I’m willing to accept.

So. It’s time to start getting back to it.

Up we go.


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