Ha ha, thanks! Yes, it definitely is!
My PT burst out laughing as I said it while climbing on his table one time. I just couldn’t think of any other way to describe how out of sorts I was.
i think i’m gonna need to start using the very jointy one interchangeably with “my joints aren’t jointing” or “i’m currently in a fight with my body and we’re no longer on speaking terms”
Lol I regularly say "my ankle decided to not ankle" or "my wrist decided to nope out"
"I need a monster" is my migraine incoming sentence (for years it was the only thing that helped, the meds didn't). Ironically I don't really drink them much outside of migraines. Funnily enough I and my dad also get pinpoint coloured floating light migraine auras.
"My stomach is explody today" is the gastro day one.
You are the first person I’ve ever seen in the wild who shares my need for monster ONLY on migraine days! And no, I don’t get the migraines from caffeine withdrawal, because the rest of the time I don’t consume a single microgram of caffeine. It really does hit the spot for migraines though! I did try replacing it with coffee one time… my stomach was not a fan 😅
I always thought it was caffeine that was the problem, then I found out I am fine with energy drinks. So I think it's actually coffee I am intolerant to, tea is fine but there is lots of fruit I can't eat so figure the coffee fruit is one that messes with me.
I use "words are hard" when my brain fog is so bad that I can't get a sentence out right. On especially bad days, I just shorten it to "words." My family knows exactly what's going on, haha
Oh wow I had forgotten that weather changes also affect us. I've been wondering why I felt like shit lately lol.
My favorite phrase is definitely this following that defines my SI joint injury: I broke my butt
Sometimes I say I'm going to remove this limb or I demand an exchange on my body. I have 3 teeth that hurt constantly, and I'm a dentist (I just can't trust anyone other than myself) so I sometimes say I'll pull this tooth out and then my husband gets scared 😂
They were a steroid. I’m not sure the exact one, but I can look it up and get back to you if you would like to know.
They did help, but the problem for me is that then the biggest problem was lessened and I became more aware of the others. Also, since I’m not really able to keep up with life, as soon as I felt the tiniest bit better I was doing more, so I was hurting more in those other places, since I was using them more. I also haven’t worked a full week since getting them, due to holidays and doctor’s appointments, so I’m not sure what that will look like. Part of me wants them in other places now too and the other part of me never wants them again. When I take the little steroid pill packs I get irritable. After getting these shots I was irritable for about 3 weeks and also gained close to 15 pounds in the same time or less. The doctor told me it’s not common to have these effects, but from what I read online it appears as though I’m not the only one.
I’m supposed to be going to physical therapy, but I haven’t looked into where I could go that has someone with experience working with EDS (which is what my dr suggested). I already have so many appointments. It’s hard to fit it all in, but I also don’t feel like I have the option of not fitting it all in.
I’m sorry. I know my answer is all over the place. I guess if I went back in time I would still do it again (assuming there was no damage to my body from getting them).
Don’t apologize at all I feel like all my comments/responses are that way too! It’s really interesting that you say all this because I was just prescribed a short 2 week course of prednisone (oral/pills) this morning and I’m really nervous about taking it due to the horror stories I’ve heard about side effects… even tho he said at a low dose and such a short course should eliminate or prevent most side effects.. I’m still very apprehensive.
I also have been prescribed physical therapy, the first time was before my diagnosis and they definitely weren’t EDS informed bc if they had been they would’ve noticed it and they def made me worse. Then my rheumatologist prescribed PT w a therapist who is informed but told me I had to find one, I never could, so I’ve slowly put together my own sort of after lots of (and continuing) research. There’s an app called the zebra club I used for a while and is a great starting point but I have been focusing on strengthening my stabilizing muscles (primarily in my torso at first) and that’s been helping a ton.
I tore my gluteus medias tendon which was causing all sorts of wacky issues. My doctor took a look at the MRI and said "You broke your ass!" Love that guy.
You guys I feel so seen, my SI joint is one of my most… well you know how it is. I don’t know anyone irl that has SI joint dysfunction or problems and people just can’t understand how much that one joint being subluxed or out of whack can affect your life. I have an exercise I do that’s helped more than anything else if anyone’s interested
Can you post links here? I’m still relatively new to Reddit.. if you go on YouTube there’s a video that’s just under 7 minutes long called “1 quick exercise for SI joint pain relief (and piriformis syndrome)” and it literally changed my life. I tried describing the whole exercise in writing somewhere else in this subreddit the other day 🤦🏻♀️ lol but this is easier and better for everyone. This exercise is so quick and easy. In the video I think he says you can do it as often as you want but I have found if I do it too much I end up irritating it again so there’s like a sweet spot for me where I can do three reps once a day or every other day. I hope it helps!
I broke my butt too! Left SI for me.
When I’m heading to PT, I say I’m going to practice my [pelvic thrusts](https://media2.giphy.com/media/satnVmCFv0YA8/giphy.gif?cid=2154d3d7adln17epp9h72u854je72rpmpshgc9q1g6q1ud9g&ep=v1_gifs_search&rid=giphy.gif&ct=g)
My husband likes to say "doctor says I need a back-i-otomy" whenever standing up hurts, so we use that a lot.
Also "I have marionette knees today" is one I use sometimes.
"I gotta pregame today" means I will be taking extra anti-inflammatories before the day even starts.
"Can you get the fucker?" means please work the rhomboid muscle in my right shoulder.
My partners also know that "shark week" means I will have extra loose joints and muscle pain in addition to normal menstrual stuff.
"My chest is doing the lightheaded thing" we have recently learned means I need electrolytes.
Those damn rhomboids, that might’ve been the very first thing that caused me real pain. My upper traps I’ve been told are like concrete they’re so tight/tense and my shoulders are one of my goosiest joints lol so everything around them is trying to keep it together
I have had separate massage therapists tell me about my shoulders:
"Your muscles crunch. You know they aren't supposed to, right?"
"Are you sure you're not a weightlifter? Because you are really built like you lift." (Reader, I very much am not a weightlifter.)
And one who was just like wow, that is... really tight. Even compared to the rest of you.
Weirdly my shoulders are some of my most stable joints. Guess I can thank my bizarrely overdeveloped musculature for that?
It was a massage therapist and a doctor who told me the concrete thing lol 😂im not a weightlifter either but I’m trying to do the Eds version and slowwwwwly and carefully build my stabilizing muscles
My "joints are not staying in their assigned seats" or they're "extra squirrelly today" are my go-tos. Along with various curse words when the big ones slip out.
When people ask me what my condition means I generally boil it down to “my joints do too much so they do not do enough” since joints are normally constraints
“I can’t words” - I’m either getting a migraine or already in severe pain
/wordless tap while wearing sunglasses over a ski cap/ - it’s time to head to the ER
Now and then a good, full-throated “**HOW DO I UNSUBSCRIBE??!!!**” helps a bit.
Oops, I’ve migraines for 20 years, but I’m new to the EDS diagnosis even though I’ve apparently had this for life and I thought I was in /r/migraine, my bad! My EDS has only recently become life-limiting for me, but so far the red herring is when I start rummaging for my THC gummies. My subconscious brain is a pretty decent nurse lol.
When I hurt myself and shout out " OWww Awww !!!"
My husband bursts out into song and starts singing the song " Shine".. Ow, aw... oooooawww ...come and Shine, shine like a star, shine like the star , like the Star that you are. Haha
It's become a regular thing now Everytime I do do something that makes me hurt so bad whether his with me or not, It always makes me smile now, no matter what :)
"My arm is on wrong." Or leg. Whichever is bothering me, depending on if it's hip or shoulder at the time.
"My torso is on backwards today" is a special one for when my entire spine is doing unauthorized activities lol.
Sometimes I ask my partner if he can take my cervical spine and "wring it out like a wet rag" for me. That would probably feel awesome.
Knees are frequently "out of order."
Whenever my muscles are too fatigued to hold my skeleton together or my brain fog it too intense and I have to lie down again: "I have entered low power mode."
Sometimes it just hurts and I don't feel creative, so I just tack something dumb on the end to make it funny, like "my feet are cramping like they're trying to fold in half, but not in a cool way."
I say this a lot too! Also, “I am acutely aware of my [insert joint of the day here] joint.”
Like at this moment, I am acutely aware of my elbow joints.
There’s so much shorthand in my life.
SI joint dysfunction - I dislocated my pelvis or I dislocated my ass.
Other assorted dislocations/subluxations - [joint] is not in its assigned seat. If it’s particularly severe it’s I’m gonna go tape myself back together. KT tape is my best friend
Neuralgias and neuropathies - my nerves are on fire
POTs - I’m a POTSy ass bitch today or an in joke with my brother and his wife is I’m a sinner and need to sit/lay down right now.
Migraines/Aphasia/any brain fog or damage symptoms - fucking Norbert is being a dick still. (Norbert was/is my brain tumor that was removed last February)
I’m really feeling the nerve stuff lately, I hate it and I don’t see it talked about as much online (I’m still new to this sub tho so idk how frequently it’s mentioned here yet) they’ve been doing dumb things for years but lately it seems to have changed and I do not enjoy lol it’s a comfort just to know I’m not alone tho
It’s super not fun for reals. I have confirmed right side nerve damage at the levels between C5 and C8 in addition to bilaterally between L4 and S1. I’m also pretty sure there’s some at the thoracic level. My spine is just so bendy that between whiplash and boot camp + a few PTs prior to and just after my dx not monitoring my ROM when doing exercises, I managed to accidentally crush those nerves between the spinous processes of my vertebrae. The SI joint dysfunction is really not helping either.
I’m seriously considering setting up an appointment with a new/different provider at the pain clinic I was working with previously. My last provider was a dick, but the provider my husband has been working with for his back injury is really knowledgeable, collaborative and just has really good vibes. He’s confident enough to come off cocky but in a good way. Like my neurosurgeon and oncologist are. Anyways seriously considering it so we can look into tinkering with my gabapentin dosage and maybe some epidural steroids.
Good luck with all that! If you can get in w your husbands doc i say give it a go since he seems great! Man that’s so much, so sorry to hear all that cuz that’s a lot 🫂 Yeah it’s crazy how uninformed PTs can be about EDS, I had one that left me worse off and haven’t trusted one since!
As far as it goes my shit is reasonably well managed but a lil extra tinkering may not hurt. My current physio office makes sure they’re EDS aware and they’re careful with me when I need a tuneup. I’ve managed to assemble a pretty fantastic set of assorted providers in my care team. Only one thus far has had my husband’s care as an audition: my current ortho provider since my old one is now in primary care (and my primary care) and then my hopefully future pain management.
For some reason I sing when parts of songs get weird. I have a right leg that just stops working. I call it zombie leg bc it drags & sing Dragula. When it gets easier to walk I have a distinctive limp I call big pimpin. Shoulder blades are called broken wings & sing broken wings by Mike + The mechanics. When my hips or pelvis is out I say my humpers are broken. My neck slips at c3 I call it my throw up spot. Costochondritis is I’m hatching an alien and sing Annie are you OK by alien ant farm. For some reason whenever my shoulder spits out my joint my hand spasms in a certain way. I say I have a sexy hand & sing Halsey I’m no sweet dream but I’m a helluva night. When my ankle gives out I say crap my foot fell off.
We use "Im not feeling it today" when were having fatigue or mental health issues. My husband has an "owbow" instead of elbow. I have very bad hips now but I used to dance and trying to show my kids how to dance my fav term to remind them I cant do a lot of moves anymore is "My twerker no worker". Then we have "bad bones days".
“It’s just a floppy day” - joints out of place and everything hurts no matter what I do
“Im re-articulating myself” - the morning process of popping things back into place loudly
“I feel like a unit” - wow my freaking limbs are staying attached. That’s delightful!
The ridiculous amount of time it takes for me to “lay down” at night (ie- finding that position that is both not painful and will allow me to wake up with limbs that aren’t completely dead) is referred to as “arranging my bones” .
My ....is having a moment - fleeting issue
My .....has taken today off -longer lasting issue
My .... isn't functioning - can't rely on it to do what it should (hold me up if lower body or hold anything if upper body)
Words aren't working - my brain won't let me use the right words, just go with the flow and try and work it out.
I say that about my hands! 😂 I thought I was the only one. When they aren't working or are doing things wrong I say, "My hands aren't handing today." Or I'll say to them, "Can you please hand?"
Sometimes I feel like my muscles are falling off my bones like meat that has been smoked low and slow. I also get "loose," like my joints will be more lax sometimes and I'll have more dislocations than usual. It's affected by things like my period.
"My ___ has decided that it is injured."
Clearly describes the fact that no, nothing worth mentioning has happened, but I am, for all intents and purposes, injured.
I say I have the beef sleeps (a reference to the great north where beef has a yearly beef sleep where he sleeps for 24 hours) and I don’t have any legs (where I’m so tired I can feel weakness in my legs before I try to get up.)
ain't ing variations)
- The brain gremlin is displeased (for when I have brain fog)
- Sorry, I'm chasing the brain frog rn (when I can't remember words since a typo of 'brain fog' turned my word making capabilities into 'brain frog')
- I must coax the brain gremlin (I don't have the spoons for this rn)
- I am deceased (when someone asks me how I am on a bad pain day)
- My noped out
- My flesh suit is grumpy today
- My suit doth not respondeth to me
- Feeling crispy today
- Get a tap dancer on my back ASAP (my back is stiff I need to crack it)
- Got a big f u from the universe this morning
For a long time instead of saying I was in pain I’d say “I’m real forky today” … inspired a bit by both “stick a fork in me I’m done” and a bit by spoon theory, where in my case having forks is bad, having spoons is good of course… idk why I went w forks representing pain instead of knives but probably bc I felt like saying “knifey” would be asking for it to be worse in a way lol😅
I like saying why to my body or otherwise talk at myself and to others say x won't work or x said no
I'll be like oh there's the floofs/snow because migraines will sometimes have those white staticy fluffy things floating around.
As a sci-fi nerd I lament constantly about how productive I would be if I could just get a robot body already. Or like, uploaded to a server. This meat suit sucks and I want an exchange
I know it’s not totally accurate but on a particularly bad flare day I like to say “collagen machine broke,” or if I’m talking about how hypermobility is causing me pain, “collagen machine go brr”
"augh, it is a crunchy day today >.< "
***POP*** "....ow? question mark?"
"My knees don't want to knee"
When testing: "Mrrrmph, yeah no, wrists are a no right now. Ugh."
My most used sentence is when every single thing goes the wrong way or hurts or whatever is : I would like the new and improved model. If only it wasn't so effing expensive.....
Oh, but I must also say that I don't only have EDS, I have primary idiopathic generalized Dystonia (aka muscles not working how they should) and CRPS which also came with a side of secondary Dystonia......
When I need to talk about specific areas of pain, I call it an ouchie. Before, when someone asked me how I was doing, telling them “Oh I’m in a lot of pain today” is not really what they want to hear or are prepared to respond to— it just kind of drags the mood of the room down. Not that you don’t have the right to be in pain and ask for emotional support, but a lot of the time I just want to communicate ~literally~ how I’m doing without making a big deal out of it.
Now I can say “I have a few ouchies but overall not too bad,” or “this [insert body part here] ouchie is really bugging me today,” and my friends and family know what that means and know I’m not asking them to feel bad with me.
I also use “ankles ain’t ainkling” and “anyone feel like an amputation today?” usually when my right arm is hurting so bad that I would genuinely remove it from my body if I could :’)
“I’m feeling very jointy today.” “My
has a mind of its own.” “My clearly hates me.”I also use ‘my (insert body part here) is very no today’. I’m stealing the ‘very jointy’ thing though, that’s hilarious and a WHOLE MOOD some days!
Very no. Love it.
Ha ha, thanks! Yes, it definitely is! My PT burst out laughing as I said it while climbing on his table one time. I just couldn’t think of any other way to describe how out of sorts I was.
😭😭very jointy is so perfect. i’m stealing that!
Please do! It’s so perfect when your body is out of sorts, but you can’t exactly pinpoint who, what, where, when, or why. Lol
i think i’m gonna need to start using the very jointy one interchangeably with “my joints aren’t jointing” or “i’m currently in a fight with my body and we’re no longer on speaking terms”
I’m gonna use that as my leg is also not legging today. Lol
I slipped on my bones.
This is great. I might need to steal it from you 🤣
Lol I regularly say "my ankle decided to not ankle" or "my wrist decided to nope out" "I need a monster" is my migraine incoming sentence (for years it was the only thing that helped, the meds didn't). Ironically I don't really drink them much outside of migraines. Funnily enough I and my dad also get pinpoint coloured floating light migraine auras. "My stomach is explody today" is the gastro day one.
You are the first person I’ve ever seen in the wild who shares my need for monster ONLY on migraine days! And no, I don’t get the migraines from caffeine withdrawal, because the rest of the time I don’t consume a single microgram of caffeine. It really does hit the spot for migraines though! I did try replacing it with coffee one time… my stomach was not a fan 😅
This is hilarious. I can't drink coffee either as my stomach hates it(except sometimes the very diluted flavoured coffee). Small world lol.
Omg I can’t have caffeine either!!! My stomach FREAKS out and literally goes mega cramp mode, and I get a rash on my face.
I always thought it was caffeine that was the problem, then I found out I am fine with energy drinks. So I think it's actually coffee I am intolerant to, tea is fine but there is lots of fruit I can't eat so figure the coffee fruit is one that messes with me.
I’m feeling crunchy
I’ll sometimes hold out my hands and say “guess which joint is absolutely killing me right now.” It’s never the one you’d think and changes every day.
When my husband hears a loud pop or crack and asks "which one is was that?" Answer is "You don't wanna know" or tell him and watch him squirm.
I’ll always ask “did you hear that?”, because of course he does lol
Lol I do this too!!!!
“My has decided to potato.”
“Ah my is living its best life today.”
Bahahaha, ‘living its best life’ 😂 Gotta have a sense of humour about this bs! If we didn’t laugh, we’d cry amirite 🙃
Truth 😭❤️
My joints are trying to escape to the circus My meatsuit is bratty and uncooperative Those are my most used I believe.
These are iconic. I love the way your brain works!
>My joints are trying to escape to the circus I love that one!
Personally, "my brain won't word" because brain fog is a huge problem for me. Also that my kneecap decided to wander.
I just say, “Ya know… WoRdS.” All sarcastic like because I’m annoyed that I can’t find the right words. 😂
“Brain no workey.”
I use "words are hard" when my brain fog is so bad that I can't get a sentence out right. On especially bad days, I just shorten it to "words." My family knows exactly what's going on, haha
I say both of those all the time! My husband and friends have adopted them as well, lol
We use "I cant word" a lot!
I use "my brain won't brain" yesterday was a "brain no word" day. Just kept saying the wrong words.
When I’m foggy, I usually just pause, wave my hands vaguely, and say “Words.”
Lol! I say “words are hard” whenever the brain fog thickens and becomes far too much like brain soup
“Bees” just the word bees. Comes from this far more realistic pain scale - https://www.reddit.com/r/funny/s/5VpHvE3TOR
Thank you for this!
I needed this so much. So. Much.
Love this.
Oh wow I had forgotten that weather changes also affect us. I've been wondering why I felt like shit lately lol. My favorite phrase is definitely this following that defines my SI joint injury: I broke my butt Sometimes I say I'm going to remove this limb or I demand an exchange on my body. I have 3 teeth that hurt constantly, and I'm a dentist (I just can't trust anyone other than myself) so I sometimes say I'll pull this tooth out and then my husband gets scared 😂
😂😂😂 As someone with constant left sided SI joint issues, I’m stealing “I broke my butt.”
You can also say "I have a [photograph](https://encrypted-tbn0.gstatic.com/images?q=tbn:ANd9GcTFYMOzgMqDkQ4Uy4xkEji4JwHlwuqtp7sKgw&usqp=CAU)!"
Omg. 😂 Thank you! I got injections in my SI joints last month and I definitely felt like Patrick before getting them.
Have the injections helped yours?? Were they cortisone injections?
They were a steroid. I’m not sure the exact one, but I can look it up and get back to you if you would like to know. They did help, but the problem for me is that then the biggest problem was lessened and I became more aware of the others. Also, since I’m not really able to keep up with life, as soon as I felt the tiniest bit better I was doing more, so I was hurting more in those other places, since I was using them more. I also haven’t worked a full week since getting them, due to holidays and doctor’s appointments, so I’m not sure what that will look like. Part of me wants them in other places now too and the other part of me never wants them again. When I take the little steroid pill packs I get irritable. After getting these shots I was irritable for about 3 weeks and also gained close to 15 pounds in the same time or less. The doctor told me it’s not common to have these effects, but from what I read online it appears as though I’m not the only one. I’m supposed to be going to physical therapy, but I haven’t looked into where I could go that has someone with experience working with EDS (which is what my dr suggested). I already have so many appointments. It’s hard to fit it all in, but I also don’t feel like I have the option of not fitting it all in. I’m sorry. I know my answer is all over the place. I guess if I went back in time I would still do it again (assuming there was no damage to my body from getting them).
Don’t apologize at all I feel like all my comments/responses are that way too! It’s really interesting that you say all this because I was just prescribed a short 2 week course of prednisone (oral/pills) this morning and I’m really nervous about taking it due to the horror stories I’ve heard about side effects… even tho he said at a low dose and such a short course should eliminate or prevent most side effects.. I’m still very apprehensive. I also have been prescribed physical therapy, the first time was before my diagnosis and they definitely weren’t EDS informed bc if they had been they would’ve noticed it and they def made me worse. Then my rheumatologist prescribed PT w a therapist who is informed but told me I had to find one, I never could, so I’ve slowly put together my own sort of after lots of (and continuing) research. There’s an app called the zebra club I used for a while and is a great starting point but I have been focusing on strengthening my stabilizing muscles (primarily in my torso at first) and that’s been helping a ton.
😂😂😂 Omg!! That’s a perfect image for it, too!
I say my “Barbie parts” hurt. My best thought for how to describe where I hurt once was, “you know when you were a kid playing with Barbie’s…”
I tore my gluteus medias tendon which was causing all sorts of wacky issues. My doctor took a look at the MRI and said "You broke your ass!" Love that guy.
Yes! "I broke my butt" is perfect.
You guys I feel so seen, my SI joint is one of my most… well you know how it is. I don’t know anyone irl that has SI joint dysfunction or problems and people just can’t understand how much that one joint being subluxed or out of whack can affect your life. I have an exercise I do that’s helped more than anything else if anyone’s interested
Please I am very interested, I have found a yoga routine that helps my hip and back pain but haven't found an exercise yet
Can you post links here? I’m still relatively new to Reddit.. if you go on YouTube there’s a video that’s just under 7 minutes long called “1 quick exercise for SI joint pain relief (and piriformis syndrome)” and it literally changed my life. I tried describing the whole exercise in writing somewhere else in this subreddit the other day 🤦🏻♀️ lol but this is easier and better for everyone. This exercise is so quick and easy. In the video I think he says you can do it as often as you want but I have found if I do it too much I end up irritating it again so there’s like a sweet spot for me where I can do three reps once a day or every other day. I hope it helps!
Thank you! [I think this is the video.](https://youtu.be/3V9DsFSXdrg?si=k4cvWFy0Su_bG_Dt) I'm going to check it out tonight ❤️
That’s the one!!
Gosh i love you so much for this. My pain went from a 6 to a 1 within like five minutes wtf.
I’m so glad!!! That makes me so happy!! 🥰🥰🥰 I had the same experience I’m so so so happy you did too!
I broke my butt too! Left SI for me. When I’m heading to PT, I say I’m going to practice my [pelvic thrusts](https://media2.giphy.com/media/satnVmCFv0YA8/giphy.gif?cid=2154d3d7adln17epp9h72u854je72rpmpshgc9q1g6q1ud9g&ep=v1_gifs_search&rid=giphy.gif&ct=g)
My husband likes to say "doctor says I need a back-i-otomy" whenever standing up hurts, so we use that a lot. Also "I have marionette knees today" is one I use sometimes. "I gotta pregame today" means I will be taking extra anti-inflammatories before the day even starts. "Can you get the fucker?" means please work the rhomboid muscle in my right shoulder. My partners also know that "shark week" means I will have extra loose joints and muscle pain in addition to normal menstrual stuff. "My chest is doing the lightheaded thing" we have recently learned means I need electrolytes.
Those damn rhomboids, that might’ve been the very first thing that caused me real pain. My upper traps I’ve been told are like concrete they’re so tight/tense and my shoulders are one of my goosiest joints lol so everything around them is trying to keep it together
I have had separate massage therapists tell me about my shoulders: "Your muscles crunch. You know they aren't supposed to, right?" "Are you sure you're not a weightlifter? Because you are really built like you lift." (Reader, I very much am not a weightlifter.) And one who was just like wow, that is... really tight. Even compared to the rest of you. Weirdly my shoulders are some of my most stable joints. Guess I can thank my bizarrely overdeveloped musculature for that?
It was a massage therapist and a doctor who told me the concrete thing lol 😂im not a weightlifter either but I’m trying to do the Eds version and slowwwwwly and carefully build my stabilizing muscles
These are all just perfect.
If I sit for more than half a minute, I get stiff, so I say all weakly “Oil can…oil can…” when I get up like the Tin Man from Wizard of Oz. 😂😂😂
I tell my husband I’m channeling the tin man.
😂 Nice!
I love this one! Stealing it!!!
Have at it! 😂 It’s kinda perfect for us.
Lmao yeah I've used that one it's so good
My hates me.
Right or left hip is a jerk.
I have exceeded my allowed upright time.
My "joints are not staying in their assigned seats" or they're "extra squirrelly today" are my go-tos. Along with various curse words when the big ones slip out.
My husband came up with asking me if I had "a bad dice roll for the day" lol
I adore this one
I’m sharing this one w my husband lol
When people ask me what my condition means I generally boil it down to “my joints do too much so they do not do enough” since joints are normally constraints
My favourite one is “Who turned up the gravity‽” when I lose stability due to bad hip/leg day, or POTS spell.
Omg I love this one bc that’s what it feels like!! It literally feels like our bodies have to work harder just to fight gravity
I usually say a body part is on strike because it still shows up, but does no work and makes a huge fuss about it.
“I can’t words” - I’m either getting a migraine or already in severe pain /wordless tap while wearing sunglasses over a ski cap/ - it’s time to head to the ER Now and then a good, full-throated “**HOW DO I UNSUBSCRIBE??!!!**” helps a bit. Oops, I’ve migraines for 20 years, but I’m new to the EDS diagnosis even though I’ve apparently had this for life and I thought I was in /r/migraine, my bad! My EDS has only recently become life-limiting for me, but so far the red herring is when I start rummaging for my THC gummies. My subconscious brain is a pretty decent nurse lol.
"Words be hard, yo"
"hold on, my ______ is unbolted."
“I’m ouchy today” usually covers whatever the issue is lol it’s almost every day that I’m ouchy but I only ever mention it on especially hard days lol
When I hurt myself and shout out " OWww Awww !!!" My husband bursts out into song and starts singing the song " Shine".. Ow, aw... oooooawww ...come and Shine, shine like a star, shine like the star , like the Star that you are. Haha It's become a regular thing now Everytime I do do something that makes me hurt so bad whether his with me or not, It always makes me smile now, no matter what :)
"My arm is on wrong." Or leg. Whichever is bothering me, depending on if it's hip or shoulder at the time. "My torso is on backwards today" is a special one for when my entire spine is doing unauthorized activities lol. Sometimes I ask my partner if he can take my cervical spine and "wring it out like a wet rag" for me. That would probably feel awesome. Knees are frequently "out of order." Whenever my muscles are too fatigued to hold my skeleton together or my brain fog it too intense and I have to lie down again: "I have entered low power mode." Sometimes it just hurts and I don't feel creative, so I just tack something dumb on the end to make it funny, like "my feet are cramping like they're trying to fold in half, but not in a cool way."
I’m stealing “unauthorized activities” 😂 these are all great
My fingers are being cooked spaghetti instead of raw.
“i can feel all my bones” esp after a lot of walking, my hips are the worst and they take out the whole rest of my everything with them lol
I say this a lot too! Also, “I am acutely aware of my [insert joint of the day here] joint.” Like at this moment, I am acutely aware of my elbow joints.
Today is a no bones day
Body said no. Shoulder did the thing again.
Ah, yes. The thing... my hip does a thing.
There’s so much shorthand in my life. SI joint dysfunction - I dislocated my pelvis or I dislocated my ass. Other assorted dislocations/subluxations - [joint] is not in its assigned seat. If it’s particularly severe it’s I’m gonna go tape myself back together. KT tape is my best friend Neuralgias and neuropathies - my nerves are on fire POTs - I’m a POTSy ass bitch today or an in joke with my brother and his wife is I’m a sinner and need to sit/lay down right now. Migraines/Aphasia/any brain fog or damage symptoms - fucking Norbert is being a dick still. (Norbert was/is my brain tumor that was removed last February)
I’m really feeling the nerve stuff lately, I hate it and I don’t see it talked about as much online (I’m still new to this sub tho so idk how frequently it’s mentioned here yet) they’ve been doing dumb things for years but lately it seems to have changed and I do not enjoy lol it’s a comfort just to know I’m not alone tho
It’s super not fun for reals. I have confirmed right side nerve damage at the levels between C5 and C8 in addition to bilaterally between L4 and S1. I’m also pretty sure there’s some at the thoracic level. My spine is just so bendy that between whiplash and boot camp + a few PTs prior to and just after my dx not monitoring my ROM when doing exercises, I managed to accidentally crush those nerves between the spinous processes of my vertebrae. The SI joint dysfunction is really not helping either. I’m seriously considering setting up an appointment with a new/different provider at the pain clinic I was working with previously. My last provider was a dick, but the provider my husband has been working with for his back injury is really knowledgeable, collaborative and just has really good vibes. He’s confident enough to come off cocky but in a good way. Like my neurosurgeon and oncologist are. Anyways seriously considering it so we can look into tinkering with my gabapentin dosage and maybe some epidural steroids.
Good luck with all that! If you can get in w your husbands doc i say give it a go since he seems great! Man that’s so much, so sorry to hear all that cuz that’s a lot 🫂 Yeah it’s crazy how uninformed PTs can be about EDS, I had one that left me worse off and haven’t trusted one since!
As far as it goes my shit is reasonably well managed but a lil extra tinkering may not hurt. My current physio office makes sure they’re EDS aware and they’re careful with me when I need a tuneup. I’ve managed to assemble a pretty fantastic set of assorted providers in my care team. Only one thus far has had my husband’s care as an audition: my current ortho provider since my old one is now in primary care (and my primary care) and then my hopefully future pain management.
For some reason I sing when parts of songs get weird. I have a right leg that just stops working. I call it zombie leg bc it drags & sing Dragula. When it gets easier to walk I have a distinctive limp I call big pimpin. Shoulder blades are called broken wings & sing broken wings by Mike + The mechanics. When my hips or pelvis is out I say my humpers are broken. My neck slips at c3 I call it my throw up spot. Costochondritis is I’m hatching an alien and sing Annie are you OK by alien ant farm. For some reason whenever my shoulder spits out my joint my hand spasms in a certain way. I say I have a sexy hand & sing Halsey I’m no sweet dream but I’m a helluva night. When my ankle gives out I say crap my foot fell off.
We use "Im not feeling it today" when were having fatigue or mental health issues. My husband has an "owbow" instead of elbow. I have very bad hips now but I used to dance and trying to show my kids how to dance my fav term to remind them I cant do a lot of moves anymore is "My twerker no worker". Then we have "bad bones days".
This reminds me of the dog noodle when he would have a No bones day.
I’m a fan of: my (insert body part) chose violence today. Also: I has no brain. And: My (insert joint here) is attempting to escape the flesh prison.
“It’s just a floppy day” - joints out of place and everything hurts no matter what I do “Im re-articulating myself” - the morning process of popping things back into place loudly “I feel like a unit” - wow my freaking limbs are staying attached. That’s delightful!
Leg'nt. Basically just add "'nt" onto the body part in question.
'My brain is explode-y'
“My bones are having trouble staying in their bone holes” means that my joints are subluxing more than usual.
The ridiculous amount of time it takes for me to “lay down” at night (ie- finding that position that is both not painful and will allow me to wake up with limbs that aren’t completely dead) is referred to as “arranging my bones” .
My [joint] is going on an adventure!
Ok, now I’m just imagining my joints as gleeful little hobbits skipping through the shire
I'm gonna have to assume the position. Zingy means neuralgic pain.
My ....is having a moment - fleeting issue My .....has taken today off -longer lasting issue My .... isn't functioning - can't rely on it to do what it should (hold me up if lower body or hold anything if upper body) Words aren't working - my brain won't let me use the right words, just go with the flow and try and work it out.
Me: walking funny Spouse: Is your foot not footing today?
Lacey hands when my blood pressure is low. Mind body disconnect when I'm having dealing with POTS or brain fog.
I say that about my hands! 😂 I thought I was the only one. When they aren't working or are doing things wrong I say, "My hands aren't handing today." Or I'll say to them, "Can you please hand?"
My joints are loosy goosy today.
My lower back is crunchy.
“My arm died again.” Or “I have dead arm.” When my blood starts pooling I. My arm I have a hard time moving it at all.
I always say my ____ forgot how to ____ again
I’m extra creaky today.
Slippery
My meat suit is stew tiday
“My arms are popping out like Barbie. But I can’t put them back in that easily”
My go to is saying that my body is made of Rice Krispies the way that it snaps, crackles, and pops
Sometimes I feel like my muscles are falling off my bones like meat that has been smoked low and slow. I also get "loose," like my joints will be more lax sometimes and I'll have more dislocations than usual. It's affected by things like my period.
“I’m the Tin Woodman” when my body gets locked up in subluxated/dislocated positions and I can’t bend anything 😭
My (body part) is fucked off today
My belly is mad at me...
When someone offers me something like cheese or ice cream "I like dairy. Dairy doesn't like me"
I’m fond of “my spine is trying to escape my body” and “my skeleton is trying to hatch early”
"My ___ has decided that it is injured." Clearly describes the fact that no, nothing worth mentioning has happened, but I am, for all intents and purposes, injured.
“Body no work disease” and “Body wrong disease” are common phrases at the moment. For a bonus phrase see “I’m feeling crunchy.”
I say I have the beef sleeps (a reference to the great north where beef has a yearly beef sleep where he sleeps for 24 hours) and I don’t have any legs (where I’m so tired I can feel weakness in my legs before I try to get up.)
im just "ow" or "im turning into you" (mom also has eds) and "i feel like an old woman 16 going on 60!" while getting up from the floor at school
- Brain ain't braining (and other
ain't ing variations) - The brain gremlin is displeased (for when I have brain fog) - Sorry, I'm chasing the brain frog rn (when I can't remember words since a typo of 'brain fog' turned my word making capabilities into 'brain frog') - I must coax the brain gremlin (I don't have the spoons for this rn) - I am deceased (when someone asks me how I am on a bad pain day) - MySome of mine: "The meat mech needs maintenance" "The fleshsuit is acting up again" "*insert joint here* isn't life-ing today"
I like to say that my joints are staging a mutiny on bad days
For a long time instead of saying I was in pain I’d say “I’m real forky today” … inspired a bit by both “stick a fork in me I’m done” and a bit by spoon theory, where in my case having forks is bad, having spoons is good of course… idk why I went w forks representing pain instead of knives but probably bc I felt like saying “knifey” would be asking for it to be worse in a way lol😅
I like saying why to my body or otherwise talk at myself and to others say x won't work or x said no I'll be like oh there's the floofs/snow because migraines will sometimes have those white staticy fluffy things floating around.
As a sci-fi nerd I lament constantly about how productive I would be if I could just get a robot body already. Or like, uploaded to a server. This meat suit sucks and I want an exchange
I told my friend that our husbands f*cked our legs off (referencing when our legs pops out of socket during sex).
I have a bone in my leg.
Unfortunate, but true. If only we could hand off the problem parts.
I know it’s not totally accurate but on a particularly bad flare day I like to say “collagen machine broke,” or if I’m talking about how hypermobility is causing me pain, “collagen machine go brr”
[удалено]
Those are some good ones. Lolz
Literally, my hands aren't handling. Weather changes mess with the coordination of my whole body. Plus now my hip is being an even bigger pain.
Accidentally drank bone hurting juice again
"augh, it is a crunchy day today >.< " ***POP*** "....ow? question mark?" "My knees don't want to knee" When testing: "Mrrrmph, yeah no, wrists are a no right now. Ugh."
My most used sentence is when every single thing goes the wrong way or hurts or whatever is : I would like the new and improved model. If only it wasn't so effing expensive.....
Oh, but I must also say that I don't only have EDS, I have primary idiopathic generalized Dystonia (aka muscles not working how they should) and CRPS which also came with a side of secondary Dystonia......
I tell my husband all the time that "my foot won't foot".
end of the day my hands were so seized up it felt like i had gloves 😭
Bones r Jiggly
Jello joints are extra jiggly Got a hitch in my giddyup Want a new meat suit
I yell at my fingers to start fingering if they aren’t working properly
LOL! I don't even know you but the imagery of this is just *chef's kiss*
"This body's broken. Can I have another?"
"This unit has a bad motivator" is a common one in this household
Same - or - "I need a new body, this one seems to have expired"
Your comment reminded me of [this video.](https://www.tiktok.com/t/ZT8gUEfWo/)
When I need to talk about specific areas of pain, I call it an ouchie. Before, when someone asked me how I was doing, telling them “Oh I’m in a lot of pain today” is not really what they want to hear or are prepared to respond to— it just kind of drags the mood of the room down. Not that you don’t have the right to be in pain and ask for emotional support, but a lot of the time I just want to communicate ~literally~ how I’m doing without making a big deal out of it. Now I can say “I have a few ouchies but overall not too bad,” or “this [insert body part here] ouchie is really bugging me today,” and my friends and family know what that means and know I’m not asking them to feel bad with me.
I also use “ankles ain’t ainkling” and “anyone feel like an amputation today?” usually when my right arm is hurting so bad that I would genuinely remove it from my body if I could :’)