One of the big problems of hypermobile EDS is the pain. It’s not hyperbolic to say that, in general, we’re always in pain. From waking up with a sore back from having slept the wrong way up (every way is the wrong way up), to the last crack of a shoulder as you brush your teeth at night, something is going to hurt.
At this point, many people will say “Ah, chronic pain, we understand that”, but they’d be wrong. Chronic pain, technically, is pain which has long outlasted the actual damage to the tissue around it – It’s what’s called neuropathic, meaning that the problem is in the nerves themselves, not in the things they’re connected to – The equivalent of a “check engine” light which is always on, regardless of the status of the engine. In the case of EDS, the check engine light is on, because there is something wrong with the engine.
Painfully bending a joint far beyond its capacity to naturally move is an injury – Think of the number of TV shows where someone is tortured by having their fingers bent backwards. Dislocating or subluxating a joint is an injury – Think of footballers and rugby players being stretchered off the pitch with their shoulder or their kneecap immobilised and iced up. Compressed or herniated discs in the spine are an injury. Prolapsed internal organs are an injury. Bruises and strains and hairline fractures are an injury.
Effectively, the problem in hypermobile EDS is that just getting out of bed can cause the kind of injuries that you’d expect to see in a rugby scrum, a bareknuckle boxing match, and a car crash, combined.
And that’s where the problem of pain relief comes in. In most cases, in long-term pain, doctors will put the patient on a GABA-analoque or amytriptaline or similar; Something that will treat neuropathic pain. This is, going back to the car metaphor, something that will fix the check engine light and let it switch on and off normally again. What’s needed in hypermobility, though, is something that will fix the problem in the engine, and something else that will cut the wires to the light altogether, at least for a little while at a time. The first is an anti-inflammatory; An NSAID or (in acute problems) a steroid which reduces the swelling around the joints, which are no doubt going to be at least a little swollen, even if not visibly so, from repeated injuries, and which incidentally takes down bruising as well. The second is, invariably, an opioid, which makes some doctors nervous, and some just thankful that they can offer something that works.
In short – No, we do not “get used to it”. There is no talking therapy, no mindfulness meditation, no regular routine of baths and walks and stretches that will make a sudden injury not hurt. As much as it’s possible to tune out an injury that you’ve had for a few days, it would take superhuman willpower to tune out a serious injury as it happens, and in the minutes or hours straight after it. Try slamming your finger in a door, or something similarly painful-but-not-that-damaging, and try to not feel it – Not to be able to tolerate the pain, but to not feel it at all. Now, imagine that happened to you every half an hour or so, every day, with no respite, not even when you were asleep, moving from place to place, so you couldn’t even just rest a single limb or know in-advance to avoid a certain movement. It’s been said that hypermobility is sometimes a bit like being followed around by someone who hates you, and keeps hitting you with a cricket bat. It’s pretty much accurate.
It’s exhausting, and constant, and that it’s so little understood even by people who know “technically” what it’s like is bloody criminal. A doctor I know admitted; “In training, we get shown old-timey photos of circus performers with stretchy skin. We get told about the luxations, but… For some reason, it never occurred to me that they hurt. Which is obvious, really. Just nobody ever mentions it.”
And that needs to change.
(Notable runners-up to be “I is for…”; Invisible illness, indigestion, ignominy, insomnia, irritable bowels, itching)