Snap, crackle, pop!

From The Bendy Blog.
Terrifyingly true. Ask anyone who's ever lived with me. I sound bone-crunchingly horrible when I stretch. Some of it's cavitation, some of it's ligaments slipping over other things. Some of it's just mystery snapping noises. I've popped pretty much everything at one point or another, some of it not on purpose. Things that I crack intentionally include all of my fingers and toes (multiple joints), my wrists and ankles (sort of a quiet clicky noise), my elbows (alarming crunch), both patellae (loud hollow pops, either by kneeling or by twisting my knee sideways), everything all the way down my spine (including up around my atlas/axis), and both hips (only occasionally). Mercifully, I do not get terrible noises out of my TMJ, nor do I dislocate ribs while coughing as some EDS patients do, although if I twist and stretch just right I can pop something whose location suggests it's the medial ends of my clavicles.

Other people find it deeply creepy, and I do it anyway. Otherwise I start to feel cramped and claustrophobic. If I do a really good job, particularly with large joints or vertebrae, the thunk reverberates internally. I don't know if it's a hydrostatic pressure change or something neurological, but it's incredibly satisfying, in much the same way as when your head is stuffed up and you finally manage to blow your nose forcefully enough to clear out your damned ears. Something gets temporarily unblocked. I assume this is what makes other people think chiropractors are actually doing something, although you can crack your back at home and get exactly the same miracle effect for free, and without someone trying to sell you magic vitamin supplements.

The terrible noises make other people think all the joint manipulation hurts. Not true. The hurty part is completely independent. I really have no good way to talk about that part; I'm not other people and I have no idea how much pain they aren't in, plus everyone complains that aging hurts in general. I have chronic back and neck issues, and other stuff just sort of aches at random. It's common with the various bendy disorders -- you make up for having less structural stability in your joints by using muscles to keep them steady, and humans aren't technically built to do that. I just treat Aleve as a dietary supplement, and knock one back with my multivitamins. I've never bothered to complain about it to a doctor. The only thing they'd do is give me a different NSAID that I'd have to get at the pharmacy instead of grabbing off the shelf. Since naproxen works, there's no point.

I did have to train myself to make the distinction between achy stuff that just happens, and pain that means I'm actually doing damage to something. I had a very poor model for this. The only thing that my sister and I have ever agreed on is that if our mother says something isn't painful, we don't believe her. She told us that childbirth "didn't really hurt". Okay, it's easy for some women, and we were small babies, maybe it wasn't so bad. She also has stories about breaking her foot as a kid and walking several blocks on it before someone stopped her, and getting into a bike crash and not realizing her hand was broken until the x-rays came back. She stopped bothering to alert dentists when the novocaine wore off, which is kind of a diagnostic hat trick -- EDS patients tend to have high pain tolerance, because anaesthetics and painkillers work poorly or not at all, and they are deemed hysterical with alarming regularity when they attempt to tell people this.

(I've only just recently realized that Chloraseptic throat spray is probably supposed to work for more than fifteen or twenty seconds. Orajel and clove oil are similarly ineffective. Injected novocaine works better on me, but doesn't last as long as it ought to. Opioid painkillers do a lot of things, but none of them involve killing pain. If it's that bad, I usually just knock myself out with dissociatives.)

Since the distinction I draw tends to be "actually damaging stuff" vs "just making me miserable", I do a lot of things that make other people boggle. Migraines do not damage things, and mostly I just bluff my way through them. My obvious symptoms are usually restricted to one or more bloodshot eyes and being kind of distracted, so I get away with it a lot. (Not always true for migraineurs -- some people get puffy swollen faces and one unfortunate soul of my acquaintance goes properly aphasic.) I learned how to cover for panic attacks particularly well, as not only could I not do anything about them before I was introduced to the wonders of Xanax, but admitting that I was suffering got me shouted at.

The joint problems really weird people out. I have come to realize that most people find it alarming when they have to specifically learn how to not collapse their knees. It's had some odd results. For a long time, I thought that slipping on ice was one of those things that only happened in sitcoms. I'm the person other people grab for when they tank. It's not because I'm surefooted -- it's exactly the opposite. I assume all of my joints are going to wobble and my foot is going to end up somewhere I didn't put it, and just learned to compensate for that with balance and momentum instead of flailing around fighting it. You can watch it in action if I'm hurrying across uneven terrain, too; if my foot lands on something that tips over unexpectedly, I just let the ankle fold and keep on going. Balance boards are NBD.

You can't just stop everything when something goes wrong. Stuff goes wrong with me often enough that if I did that, I'd never get out of bed. I would like a wee bit more sympathy from the medical establishment, and perhaps some acknowledgement that I don't come ask them for sedatives for shits and giggles. Other than that, I dunno what to do, other than keep making creepy Rice Krispies noises and try not to break anything too badly.

Comments

  1. I have perfectly ordinary pain tolerance and response to various meds as far as I know (I do have the thing where Tylenol is essentially only a febrifuge, not a pain med, but lots of people have that), and Chloraseptic still works for only a very short time.

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    1. Are you a redhead? One of the mutations for red hair also disrupts some forms of anesthesia, although so far as I know, the mechanism is unrelated.

      I get no analgesic effect at all from opioids. I've had oral Vicodin and Percocet for dental concerns and they did nothing for pain. I managed to break my arm when I was five and they gave me injected Demerol to set it. I almost went into shock, because it also did fuck-all. The side effects are so unpleasant that I now make sure my medical records say "no opioids".

      Fortunately, APAP and NSAIDs work as advertised. I just default to asking dentists and ER people how much naproxen I can really take if I'm just going to be doing it for three or four days. Dextromethorphan also works as advertised, and if I'm in that much pain, I just knock back Robitussin until I hit the dissociative dose. There isn't enough in a bottle to be dangerous, but there's plenty enough to make me stop caring that things hurt.

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    2. I have two redheaded grandparents, but quite dark hair myself. No problem with opioids -- they don't make me sleepy at ordinary therapeutic doses, nor in any way high, but they work really well on pain. I see aspirin is contraindicated for EDS, which is a pity, as for lots of people it's pretty safe long-term.

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    3. It's contraindicated because the same thing that makes connective tissue behave weirdly in joints also makes it behave weirdly in blood vessels. People with much more severe types of EDS than I have tend to bruise and bleed easily because their blood vessels are fragile. Mine is not severe enough to worry about that; that's more for people like my friend Yvette, whose case is so profound she's had multiple surgeries trying to get her shoulders to stay socketed. Hence, NSAIDs seem to be fine for me.

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  2. as someone with bad knees (yay arthritis :P) i can totally feel where you're coming from on the knees front. sometimes they just get that feeling that they have some kind of pressure in them and i need to move 'em (which makes them go off like gunshots). honestly, though, i think i prefer that to the feeling like someone is pulling them apart (which happens either before they lock up or give out on me). the second is maddening.

    hubby (and several people on his side of the family) have had issues with anesthesia not working properly for them. all i can think is that it has to be *really* uncomfortable to have a migraine and not have anything work on that.

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    1. You can learn to ignore almost anything if it happens often enough. If absolutely nothing else works, I take a metric fuckton of Robitussin. Dextromethorphan is a dissociative, with a mechanism of action much like ketamine, which is still used as pediatric and veterrinary anesthesia. It doesn't really make stuff stop hurting, it just makes it easier to pretend the hurty part doesn't belong to you until it quits.

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  3. My first dental fillings ever were done by an old man dentist whom I'd never seen before (we'd just moved to a new town) and when I told him it still hurt after the 3rd shot of novocaine, he got angry and told me I was a liar and a crybaby and I'd better just be quiet and let him finish. I was about 9. I managed to just grit my way through dental work until I was in my 20's and found a dentist who offered me laughing gas. It was the most wonderful experience I've ever had. As you said, it doesn't stop anything hurting, but I just didn't give a fuck. :) It's the only drug I've ever been tempted to try recreationally.

    A lot of things you write are a harsher or more intense version of things I've experienced, so I feel like I can almost imagine it, and I really hope things get better for you.

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    1. Your first dentist sucked. And also was not very practical. Even if he really thought you were lying just for the sake of lying, NO2 would have made you shut up quite handily.

      Nitrous oxide is one of a number of dissociatives with similar mechanisms of action which, so far as I know, work fine on me. PCP is another one of them, which is why you hear scary stories about people wigging out on angel dust and having to be taken down by a dozen cops -- PCP has additional weird effects, like rage and psychosis, and it's hard to stop someone who doesn't acknowledge pain. Less terrifyingly, ketamine is still used for pediatric and veterinary anesthesia, and dextromethorphan, aside from being in OTC cough syrup, is used as an adjunct for pain control in patients like burn victims, who would otherwise need to be given dangerously high doses of narcotic painkillers.

      As recreational drugs go, nitrous oxide is not particularly bad for you. If you make a special effort to live on the stuff, you can give yourself hypocobalaminemia, and there are some practical safety precautions to observe when inhaling stuff that gives you the whirlies so that you don't black out or inadvertently smother yourself. Aside from that, food-grade NO2, which is safe for inhalation, is widely available as whipped cream propellant.

      I am, of course, not suggesting you go do anything (gasp!) illegal, but if you are curious about the illegal things other people have lived to tell about, Erowid is my first reference for pretty much anything that does stuff to my brain. Treat it like Wikipedia plus a message board: Not a real citation for anything, but a good place to find pointers to proper journal articles and informal anecdata. Their "experience vaults" cover not just recreational drugs, but nutritional supplements, nootropics, and prescription drugs in normal therapeutic dosages.

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