Content warning: physical health, discussion of pain

Health, Mobility, and Having to Reevaluate Everything

So. I have Ehlers-Danlos syndrome. As you might imagine, this came as something of a surprise to me.

If you’ve been following along, you know it’s been a wild few months for me. I’ve been having to look at basically my entire life history in a new light, and a few friends in particular have been helping a lot with that. Most of them don’t like having attention called to them, so I won’t give any names, but you know who you are. ♥

I was talking to one friend in particular, and they mentioned that dissociation can mask pain. It’s supposedly equivalent to a low dose of opiates in effectiveness. I spend close to 100% of my time in at least a partially dissociated state because it’s the only way I can cope with being; knowing this, they were concerned that I might be masking some pain myself.

They were not wrong. At their suggestion, I focused, and could suddenly feel everything that was hurting. I always thought I just had a low pain tolerance, but it turns out that I just don’t notice anything below a 7 (out of 10) on the pain scale, but when it gets above that, I feel it all at once.

So, all of a sudden, I was aware that my knees are pretty much completely fucked, plus to a lesser extent my ankles, fingers, and right shoulder.

That made me start thinking about some of the apparently random pains I do notice. I frequently feel a growing feeling of tension in my fingers that slowly builds and becomes more painful, until I tense all the muscles and then bend my fingers just so, at which point they all go pop and the pain goes away. This, I have learned, is a subluxation, a partial dislocation of the joints. It generally indicates some sort of physical trauma or a problem with connective tissue.

As I dug deeper, things like this just pointed more and more to EDS. I spoke to a doctor, and against all expectation, they were actually helpful and immediately suggested EDS themselves without having to be prompted.

I’m still not entirely sure what to do with this. I’m not technically any less capable than I was a couple of weeks ago, but I’m more aware now of what physical activity costs me.

One suggestion I did accept was to try walking with a cane. I’m not going to lie, it took me several days to nerve myself up to actually get one. But when I tried it, it was like night and day. I can actually stand up from seated without making weird noises in my throat now.

So. I walk with a cane now. I really had no idea how badly I needed this. If you’ve ever worn glasses, it’s the same feeling as putting them on for the first time - you had no idea the world could be like this.

This is an ongoing thing. I’m still figuring out what all this means, and the doctor hasn’t referred me to a rheumatologist yet. There’s no actual treatment for EDS, so the best I can hope for is to slow down the deterioration of my joints. But it’s a start.

Tags: EDS, health