Since this is about Stephanie I thought I would add a few references that she might appreciate.. :)
So, in the first week of October last year she slipped in the shower and dislocated her right knee. It popped back in as she stood and we put ice on it and all that and went to the doctor and physio first thing the next morning. She had a rigid brace for a few weeks, was doing exercises and stuff, then she graduated to a soft brace and more advanced exercises and it was all generally going quite well in the recovery process.
But then she had a few subluxations which is a partial dislocation, the knee goes a bit wonky and sideways but doesn’t completely pop out of it’s place. But, still not very pleasant and it does set back the recovery process somewhat because it screws up the muscles and ligaments that the exercises are trying to strengthen. Generally, though, our physio told us, as long as you’re not having a complete dislocation again, chances are good that you will be able to return to full mobility through rehabilitative exercises alone rather than more serious surgical solutions.
After one of these subluxations happened, Stephanie started having pain in the entire right leg, starting partly in her foot and going all the way to her leg/pelvic joint. It wasn’t just sore and painful though, it was PAIN and taking standard OTC things wasn’t helping, and even just touching her was excruciating. So back to the doctor we went. After describing everything to him, he said it sounds like RSD/CRPS. Same condition, just has more than one name. I don’t know why exactly. Complex Regional Pain Syndrome. As the name suggests, it’s complicated, painful and affects an area of the body :) Generally it happens after an injury or surgery but not always. Obviously, for Stephanie, the dislocation and subluxations were the precipitating trauma. So the doctor prescribed some pills for Stephanie and she took them and she turned into a zombie for a while but after a couple of weeks, the all-over pain subsided and she was back to “normal”.. she still was doing the rehab exercises and was on the way to recovering.
Over Christmas and the holidays stuff stayed reasonably stable. There were a few minor subluxation incidents but we always got ice on it very quickly so it was never as bad as the first couple of times. She did still have to be careful as too much activity would wear her out and make the knee ache but resting made it better. So that was all fine and she was progressing with the rehab, still wasn’t able to do anything super active but was getting there.
Then school started again, and on about the third day they had a swimming carnival. Apparently high school kids a complete assholes and upon noticing that someone is sitting a particular way with their leg out straight on a bench, rather than assuming they should give them space because obvs they have some kind of injury, instead they just plough through with no regard. When she came home that afternoon, her leg was in agony. And this bout of CRPS has been going since then, with no indication on when it might subside.
There are OK days and bad days. The level of pain is really exacerbated by the level of activity. She has crutches which she uses as a mobility aid, so that she is putting less weight on her leg and increasing the amount of time she can actually do stuff. Still, this term we are barely managing a 50% school attendance so far. Of course, this is not helped by the at least 3 times that I have had to go pick her up because some careless idiot has done something and ended up hitting her leg somehow, making the pain level spike drastically and sometimes leaving it so that Stephanie can barely stand because it hurts so much. And this part of it really, really pisses me off. We are trying, really hard, to manage this shitbrick of a condition alongside her education as much as possible so that.. well, she gets educated. The people around her have been TOLD that they need to be extremely careful near her. It has been explained to them that she is in pain all the time and even just the lightest of touches can turn the dial on that up to full blast. Apparently, most of them don’t believe it, because it doesn’t look like there is anything wrong with her and she doesn’t use her crutches “properly” .. i.e. as a person with a leg or ankle injury uses them, that just proves there’s not really anything wrong with her. So for some of them it’s amusing to try to get in her way or take her crutches.
We tell her to whack them in the nuts with her crutches, but she doesn’t want to get in trouble. I think it is fucking fair play. Some sources describe CRPS as the most painful condition known to exist. So if they think it’s funny to deliberately mess with someone dealing with that, they fucking deserve to get their pathetic little berries crushed.
Not very peaceable of me, I know. But, well. It’s fucking frustrating. I can’t give her a panadol and make her feel better. Aside from the few deliberately assholey kids, I don’t think most people mean any harm to Stephanie.. they’re just being kids. Oblivious, living in the moment, enjoying themselves. And I don’t want to take that away from them. I just wish it wasn’t taken away from my kid. I wish there was something that could be done to make a decent improvement.
Educational part again: We have had to do some learning about pain and how it works and stuff. Most people understand that pain (generally) has an important function for us because it is a warning and a reminder about how to keep ourselves safe. You touch something uncomfortably hot and you get a burn and your brain takes note and makes sure that you’re especially careful next time you’re around hot things, because you don’t want to damage yourself again. That’s normal, everyday pain, technical name nociceptive pain. Pain where the nerves have been activated by a particular stimulus to make them send the pain message to your brain. CRPS is neuropathic pain, which is basically the nerves not behaving as they are supposed to. Sometimes it is due to actual physical damage to them, sometimes it is .. other things that people haven’t figured out yet. One of the doctors we saw at a hospital a few weeks ago, who was otherwise a bit of a douche, gave what I think is a good analogy: normally, you walk into a dark room. It’s dark, so you reach out and flick the light switch. The lights come on. A specific action has a specific result. With this, you walk into the room and all the lights are already on at full brightness, even though the switch remains in the ‘off’ state. That’s the baseline, good kind of day. On the bad days, when a breeze brushes against her leg wrong or a douchecanozzle bumps into her, it’s not only bright lights, it’s the sun with no mylar filter.
I am not joking about the breeze thing, by the way. That is called allodynia. Where normal shit that shouldn’t hurt actually hurts a really fucking lot. (Hey, I should write my own medical dictionary. My definitions are very catchy.)
It’s starting to get a bit technical when you get this far into it, but as I understand it, medicine we generally think of as pain relieving (paracetamol, codeine, morphine, all that cool stuff) is quite good when you have the nociceptive kind of pain because it has something real that it can act on to make your nerves not need to send that message to your brain. When the nerves are doing that all of their own accord, then not so much. There ARE some medicines that affect the nerves in the right way, but as I mentioned before, they happen to turn Stephanie into a zombie. That is not even an exaggeration. Ok, maybe a slight exaggeration. She’s not eating brains or anything. But she literally has trouble stringing together a coherent sentence. Even at the tiniest possible dose (⅛ of the lowest dose tablet) she was painfully stupid. And I say this with all possible affection. She’s in extension classes and stuff because she’s pretty smart. But trying to help her with her school work when she wasn’t able to attend last term and she looks at me dumbly when the question needs her to work out 10² is kind of … you know, rolling shit uphill or whatever.
The other few medications that are used to treat this kind of thing are pretty heavy duty shite. Beyond what a GP can or is comfortable prescribing, or not necessarily suitable for use in a minor. We are now waiting to get an appointment to see the Pain Team at the Lady Cilantro Hospital. Maybe they will be able to do something more in depth. Or else just teach Stephanie how to deal. I don’t know. I just hope it is not too far away, because even now while I was writing this I got a call from the school to go and pick her up. Because on Thursday mornings they have whole school parade and somebody bumped into her. Again. Is it really too much to ask for people to be a little bit careful?
It’s really pissing me off. She was sorer than usual this morning, but she got up and ready and went to school anyway. And then basically before even any classes started, some dick goes and fucks it up for her. It was an accident. They didn’t mean to. But they did. And it wouldn’t be that hard to not.
Apart from the zombie medication she can’t take, basically the only other things we have to do right now are trying to desensitise the leg in order to get the nerves to reset, which we have done by gentle touching or stroking of the skin, until she can’t tolerate it anymore, and using a TENS machine. The TENS machine didn’t really seem to do much except make it hurt more. Also using water for desensitisation is another thing but it’s awkward. Getting in and out of the bath is not easy and the other people in a public pool tend to make too many waves in the water which makes it painful before it even gets anywhere. Oh, and there is the “making your brain feel happy and relaxed” thing. By doing things you enjoy doing it makes your brain feel good and basically we want that to pass along the nervous system until it gets the fubared nerves and makes them go back to normal.
Anyway I think I have had enough of this topic for now. Because I am just frustrated at my lack of ability to do anything to help.