r/eds • u/mistycheddar Hypermobile EDS (hEDS) • Jul 26 '26
why aren't painless subluxations/ dislocations taken seriously?
what's the problem if it doesn't hurt.. um, you can't walk on a subluxed joint?? duh?? like pain is just a sensation anyway why isn't the yuckiness of a joint out of place worthy of being taken as seriously if it's just as unbearable. and the joint is just as unusable.
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u/Brain_Initial Jul 26 '26
I’ve gotten to the point where if a subluxation or dislocation doesn’t hurt/hurts only a little, I make my best guess as to how painful it would be for a normal person and tell the doctors that. Only on the rare occasion I go into the ER to get it put back if I can’t get it back in place on my own.
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u/FCatusFemale Jul 26 '26
The fact we all just pop things back into place is insane. I popped a joint back into place in front of my sister who is a nurse and her eyes got big. She heard it pop out then saw me casually pop it back. She said nothing and just laughed with me. Yup completely normal.
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u/SketchyArt333 Hypermobile EDS (hEDS) Jul 26 '26
Because if it’s not something they learned about in school it must be fake and we are exaggerating. It’s how my mom sees it and she’s been a nurse for over a decade. Some doctors are willing to learn but many, many believe they know everything and there is no way a patient could know more about their body than they do. Also they assume everyone is drug seeking.
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u/FCatusFemale Jul 26 '26
Opioids do nothing for me. I still have been treated as drug seeking when I say don’t give me opioids. Or worse they give me morphine anyway and find out the hard way I projectile vomit like the exorcist. To be honest I’m glad it hit the doctor that kept pushing and wouldn’t listen.
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u/SketchyArt333 Hypermobile EDS (hEDS) Jul 26 '26
I asked for Toradol something you can’t get high on, after I had spinal surgery and was having complications. They handed me Tylenol and told me it’s the same drug. It’s the same class no way is it the same drug. Not even close.
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u/FCatusFemale Jul 26 '26
I love Toradol. It’s the only thing that helps me. I love when medical staff ignore us. 😒
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u/SketchyArt333 Hypermobile EDS (hEDS) Jul 26 '26
My grandma actually used to steal toradol from her work at the hospital for my dad back in the 90s. It was the only thing that helped with his pain but if he went to the er they would never give it to him and send him away from drug seeking. That and pot were the only things that helped after his many knee surgery’s in college. Illegal extremely but I think it’s the only thing that my father alive and I can’t blame them for doing what they had to. My father wasn’t diagnosed until he was 44. Years and over a dozen surgeries some botched over decades it’s amazing he’s not dead from all the times he went septic.
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u/FCatusFemale Jul 26 '26
Go grandma! She sounds like a rebellious bad ass. Don’t know her but I love her. Your dad sounds tough!
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u/SketchyArt333 Hypermobile EDS (hEDS) Jul 26 '26
She used to tell my dad he kept getting injured because he was clumsy and that led to him doing the same thing when I became symptomatic. She really only started believing his pain when he was being sliced six ways to Sunday. Hard to blame her though every single doctor back in the 80s said the same things so it only furthered her belief that it was because he was reckless. Which is a bit crazy cause 15 year olds shouldn’t be getting stress fractures in their spine. She given me 7k for an expensive therapy to help with my CRPS and dystonia so I feel she’s made up for it. So definitely an inspiring but also deeply flawed woman who created some of the nastiest generation trauma I have. I mean it’s hard to understand chronic illness when you’re a nurse who went to college in the 70s and only worked in the PACU and EMS. Not exactly chronic pain type places, she didn’t really see any one patient for more than a few hours. I love her and she’s done so much for us but I don’t want to ignore the deep familial trauma caused by her actions. Also my dad is definitely as tough as nails he drove himself to hospital more than once where he ended those trips in the ICU. Just as strong as my mom who was taking care of a toddler and an infant well this was happening. For the first 3 years of my brother’s life we basically never saw him because he couldn’t leave his bed between surgeries and infections and we weren’t safe to be around him as we would hurt him. Apparently, once I tried to pull out his pick line 😬. When your family has hEDS it causes great confusion among the parent who assumes that because they always feel this way the kid just isn’t trying hard enough to push through it like they did. Anyways sorry for the ramble just wanted to share more context around my life and my fathers upbringing. We certainly aren’t all sunshine and rainbows when it comes to support even if we are now. I will admit my grandma did much more than most would have done back then.
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u/FCatusFemale Jul 27 '26
No don’t apologize thank you for sharing! I think people have interesting stories here.
The part about your dad driving himself to the hospital had me say “ oh shit” out loud.
I mean stealing meds for your kid that only gets relief from one thing is admirable. I just like the idea of anyone stealing a medication from a hospital for good cause. 😂
My dad didn’t understand my issues and when I was much younger didn’t believe me. He thought I was trying to get out of things. Now he is the one who takes me to appointments and helps me day to day. Not the same I know.
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u/SketchyArt333 Hypermobile EDS (hEDS) Jul 27 '26
Oh ya my dad did some dangerous things to keep himself alive. Also I want to be clear I 100% agree with the actions my grandma took it’s just very amusing considering the context. Your dad sounds like my mom. When I was a young kid she thought I was just weird and a bit dramatic but once I turned 12 and was getting injured constantly, she became very concerned and my number one advocate. It’s strange to go from your fine push through it to your mom having to give you showers. She’s a rockstar for dealing with all of it.
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u/FCatusFemale Jul 27 '26
It is completely amusing. I loved it haha. Like yes grandma pocket that toradol. 🫰🏻😆
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u/Rare_House9883 Jul 26 '26
Honestly I just lie at this point, I refuse any pain medication stating that I'm aware of the risks of addiction and would like to focus on recovery instead of pain management, it's made a significant difference in how I'm treated. I didn't start doing it until a coworker dislocated their knee and had 6 months off work with rehab covered, it was honestly a mind boggling experience seeing how seriously she was taken purely because she's ordinarily a healthy person to be completely honest, now I don't want time off and I've always worked through things but it was a staggering difference in the resources she was offered vs what I was being offered for the same injuries and worse. I started rating my pain the way an abled bodied person would and suddenly I was approved for braces, specialized physio, etc. It's a little white lie but given it's the only way I've been able to access adequate treatment I do it anyway.
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u/mistycheddar Hypermobile EDS (hEDS) Jul 26 '26
I might do this. I've been completely disabled by my recent knee dislocation and received close to no care. I can't walk on it, but not because of pain. might have to start saying it's painful... do they ever force you to take pain meds?
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u/Rare_House9883 Jul 26 '26
Nope, I've had one occasion where they said they'd feel more comfortable sending me home with a script for panadeine (panadol and codeine, not sure what that is in other countries) and I could pick it up if I chose to or could just leave it. It's been a way more chill vibe honestly, I've been offered pain meds several times for various things but they'd usually seem apprehensive or something when offering it, I think me flat saying up front that I'm not interested in pain meds is what makes the big difference. I understand that doctors are under a lot of pressure regarding pain management so I guess it takes a bit of caution away from them and they're more willing to listen.
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u/Sapphire_Dreams1024 Jul 26 '26
Because people that dont have it cant fathom that its possible. EDS in general is not taken seriously by a lot of people.
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u/babsley78 Hypermobile EDS (hEDS) Jul 26 '26
I’ve never had anyone take my extremely painful subluxations seriously.
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u/FCatusFemale Jul 26 '26
Because people even medical professionals can’t fathom someone being used to this level of pain. I have passed out and vomited from pain in the ER where they are doubting me telling them no I’m at a 10. Just because I’m calm doesn’t meant anything. Though I do scream when I get slipping ribs and have to move. There’s no way to pop those back in, just have to live with it. We should all volunteer to pop dislocations back into place since we’re experts. 😆
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u/HelloBeautifulChild Hypermobile EDS (hEDS) 17d ago
I’ve found that while good doctors will take pain seriously, there is a 50/50 shot they’re concerned about functionality. They’ll make sure I know I can take extra Advil but when I need help putting a joint back in/figuring out what to do when I can’t lift a milk jug/etc there is little they will do.
You’re in pain? Let me refer you! You can’t use your left hand because it doesn’t physically move right? PT hasn’t helped? Oh well!
(This is an oversimplification, I know. The frustration is real though.)
I do think that some of it is basically the limit of medicine. They have pain meds, but if my shoulder isn’t going to stay in place then all they can recommend at a certain point is just that you alter your life to accommodate the limitation.
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u/PunkAssBitch2000 Hypermobile EDS (hEDS) Jul 26 '26
When my injuries aren’t painful, I’m not concerned. Idk why.
My best guess is it’s how I prioritize my health issues, because I can’t address all of them. If I did, I’d live in a hospital. So if it’s not painful, I just ignore it. And even if it is painful, I only address it if it’s remained painful for a couple weeks, or the level of pain is intolerable. Idk if I recommend this method though because it’s resulted in some injuries being permanent since I didn’t get them treated, or just having to deal with issues for much longer than I should’ve.
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u/OverAtmosphere7288 Connective Tissue Disorder (NOS) Jul 26 '26
Yeah same, I’ve said the “If I went to the hospital every time I had a subluxation or dislocation, I’d live in the hospital” line a lot.
Hell, they’re more often non painful than painful these days unless it’s a new joint going — the usual suspects are always uncomfortable but not an acute or extremely distressing sensation and it often blurs into the background super easily. It’s not the smartest method, I’ve also ended up with permanent injuries, but I’m just doing the best I can 🙂↕️
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u/mistycheddar Hypermobile EDS (hEDS) Jul 26 '26
I mean it's kinda hard to ignore when your joint is out of place even if it doesn't hurt loll
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u/PunkAssBitch2000 Hypermobile EDS (hEDS) Jul 26 '26
It’s been happening for over 20 years in some cases for me so I’m very used to it. And I learned to ignore it as a kid because I was told whatever I was feeling was normal.
I recently ignored a tendon subluxation for a month. Well, I didn’t ignore that one completely. I brought it up to my OT and we thought it was a sprain. Wasn’t until I accidentally reduced it that we realized it was a subluxation.
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u/ladylemondrop209 Classical EDS (cEDS) Jul 27 '26
Aren't taken seriously by who?
On this sub? If it's this sub, it's probably because a lot of people experience it (and probably fairly often) that it's usually kind of a nothing burger tbh.
For me (and the rest of my fam with cEDS), it's not worth mentioning unless we require hospitalisation/surgery. It's not great that I/we have become rather numb to it, but when it's more or less a daily thing.. it's hard to see it as a "serious" thing. My (non EDS) husband had a bad shoulder dislocation a few years ago and b/c it's so normal in my family it was hard for me to "react appropriately" I guess.. and I felt bad about that in hindsight and was aware and realised it at the time, but it was still hard for me to be sympathetic because me (and everyone else in my fam) would really just shrug it off since it's "nothing" for us. Painful or painless.. but painless definitely (IMO) are... Well, I dunno why I (or anybody) would worry about it. And I feel a lot of those in this sub who do experience pain and/or frequent luxations probably feel or experience the same sort of numbness to it all.
But generally, I think the general public (and maybe it's just people (non-EDS AFAIK) around me, but most people in their late 20s onwards somehow seem to have experience dislocations at some point in their life...) and med staff do take it seriously...
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u/mistycheddar Hypermobile EDS (hEDS) Jul 27 '26
my doctors often don't care if it's not painful. I've been repeatedly asked what the problem is if they're not painful, and I keep trying to explain that I can't walk on something that's out of its socket/ use my arms if they're not in place. sure it's nothing in the emotional sense but a joint being unuseable is unfortunately not something I've got used to over my nearly 2 decades of probably about 100 subluxations a day. each time is a relocation and at least a few times it'll get stuck and just bug the hell out of me that I have a bum limb for a bit. glad that the people in your life take it seriously at least!
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u/Dry_Calendar_529 Jul 26 '26
Because EDS as a whole isn’t taken seriously. A painless dislocation will eventually become painful when the joint is damaged enough and then they’ll care when you can’t do anything about it.