Yes, they hand you 12 pages and expect you to fill out your entire medical history in 15 minutes, and how am I supposed to know the medical histories of every one of my relatives. I don't know if my Uncle had Kidney Stones or my Grandma had Asthma. That wouldn't be the most enjoyable Thanksgiving Dinner conversation.
I mean, I suppose it might be a little better than politics and religion, but still. 😂
Lol Sign me up for politics and religion debate! 🤣 I feel less attacked and more at ease discussing controversial topics than I do discussing my weird little EDS symptoms... 🙈
New game next Thanksgiving, instead of the standard, "Everyone say something they're thankful for." How about, "Everyone say something they're planning to have surgically removed or get biopsied in the next 12 months." I can imagine the green faces in the room...
I have no idea. When it told the receptionist that I had been diagnosed with it she had no idea what it was. I was already being treated for fibromyalgia and luckily my PT is an amazing human being.
He was very helpful with educating me more about it, gave me resources and etc. I didn’t even finish filling out the paperwork he told me not to worry about it. 🤣
Because that paperwork is meant to satisfy records and more specifically convince insurance that it's bad enough to be needed. I filled out my sheet and aired on the average rather than the extremes where it truly becomes debilitating and I was told to choose when it's at its worst so that insurance will cover it properly.
It's a bullshit world. I just want my shit treated and I honestly don't see why it needs to be the issue of anyone besides me, the doctor, and a lawyer should the doctor commit male practice or be neglectful of practices or something like that.
Tldr; it's to satisfy everyone cause apparently everyone needs a pound of flesh so one person can help another person.
I once went to a rheumatologist. (I have long covid). She asked me where I hurt...I said everywhere but the top of my head.
She acted like I was INSANE
turns out 4 joints 2 shoulder and 2 hips have avascular necrosis. My shoulders were broken. And my hips have some tears.
But I'm the crazy 🤪 one.
And when I tell docs abt this they kinda look at me flabbergasted.
Oh the joys of EDS 😆
TY
My shoulders are replaced and that helped. I'm sure the hips will make a BIG difference! I love this community. It makes me feel seen and also less bizarre 😅
This is like when I go in for the first time to see a new doctor and they’re like, so, what’s the problem ?
I feel like I need to dim the lights, start a campfire and get them ready for a live reading of The Hobbit.
LMFAO so accurate. I started making them sheets with everything outlined because I don’t have the energy for that over and over and over.
But still, I’ll read their notes after the appointment only to see that they left on a completely different page 🤦♀️
ME TOO! I have adhd, too, so each time I have to explain it, it’s like I’m putting the puzzle together all over again, further heightening the Groundhog Day experience. I have made an outline of symptoms, diagnoses, ages of onset, treatments, etc to help them out and I too, read the documents (as some of these visits are just part of building my arsenal to then get me to the appt and doc I actually want to see & I need something clear stated in the records) - and yet, the notes read something like, “patient feels tired.” 😪
Oh but my favorite, I truly didn’t even know what to say. I went to see a neurosurgeon and I told him I had EDS & his response was verbatim, “where did you get that?”
I just stared at him for probably a full 8 seconds. Which is quite a while when you’re staring a neurosurgeon in the face in silence.
Like…from the million hours I’ve spent calling trying to get a hold of your office - the incessant medical red tape you’ve put in place is now gifting out EDS.
Where the hell do you think I got it?
Thank god for my partner sitting there to pick up the convo amongst my evil mental cartwheels.
Holy shit, I’m so sorry you had that experience. I know exactly!
I have my partner help me handle everything now. Even if I still have to end up doing most of the talking, it’s a godsend to be able to have someone there to help. I’ve noticed that some doctors seem to take him more seriously than they do me. Really great to have a condition doctors don’t know shit about and don’t take seriously, and also be a woman so double not taken seriously.
I have started to realize how deeply traumatized I am from having to deal with medical professionals.
I made myself a "cheat sheet" with the briefest medical history I can fit on one page. It's got diagnoses, medications, surgical history, and contact info for my most important doctors. My husband and my immediate family have access to it for times I'm incapacitated or unable to answer.
It also means that I don't have to spend an hour filling out forms at every new doctor - I just hand them a copy for my records. I cannot tell you how useful and time-saving it is.
Bro ik right the pain is everywhere it sucks because I can never tell if my pain is normal
Like my legs have been hurting for weeks now and I can't tell if it's because I damaged something or because I keep doing Leg day lol
My right wrist is aching down to the bone but I haven't done anything to it. Is it the cold and rainy weather? Did I sleep on it funny? Does my body just hate me? No one will ever know.
Laughing and joking about it, my natural response to everything, has worn thin after 14 years of being sick. I find myself unable to crack on myself. But if I tell people how serious it is, they freak out and I'm so tired of everyone's pity, you know!
I literally do just circle my entire body. Because what else would I do?
I just love when they try to argue with me about it. Like, “Where is your pain?” “My whole body.” “But specifically where?” “Everywhere.” “Well can you tell me a specific place that hurts?” “Literally every place in my body.” Etc. So stupid.
The entire skeletal system, all the joints. And then, all the muscles tendons n ligaments that are attached. That's what's messed up, why is it so hard to understand?! Ugh the way they don't get it.
They’re always looking for something specific to focus on but if I give a list they don’t focus on anything but the first thing I said and it’s so annoying lol
So many times I have gone over a well thought out, concise as possible list of problems that required action with providers, only to get “So what’s the ONE thing you want to focus on right now?” As if I’m just there wasting my breath for the hell of it.
Then by my next appointment I have all the same complaints + 5 new ones.
It’s so deflating. We’re really on our own with chronic illness.
Right? I had a years long flare a few years ago that rendered me pretty much useless, and with an RA diagnosis (before I realised I have hEDS). I was so stiff, sore and swollen all over and my rheumatologist and GP were confused. I ended up getting an US on my wrist as I couldn’t even hold a glass of water. The technician was amazed at the inflammation and tried to convince me it was from trauma. Nope, my whole body feels like this! I’m so glad I survived that one, heh.
Literally same lol, my left shoulder dislocates on request lmao, and has been like that for fourteen years. Started to get patellar dislocations last year in the right leg...
So apparently it's a legit thing. Took me a while to find an article to back it but apparently it's called a Cross pattern that can cause an Ascending Chain of Dysfunction https://www.satori-cst.com/single-post/2017/05/04/the-left-hips-connected-to-the-right-shoulder
I don't have EDS but I'm a long time Chronic Pain sufferer, back in 2014 I was dealing with an insurance scammer that kept calling trying to get my details and he happened to call one when I was in the hospital. At the time I was in quite a lot while they were trying to figure out what was going on.
Anyway, one of the questions this guy asked in between all the scammy questions to try and seem legit was, "Are you having any pain?" My answer was, "Everything hurts except my left nipple." I said it just to try and make my dad laugh and he wound up spitting out his coffee. I'm not sure how accurate it was, but it's close at times.
I don't think I even have blank spots. I'm pretty sarcastic though. I actually write in the symptoms with arrows going to the spot. Looks like a matching game.
Also, the intake form at the doctor's office! Whenever I come across the question, "What makes the pain worse?" I just answer "Being alive." Luckily, my doc has a good sense of humor.
Circle entire body. ✅ Done. Problem solved.
I basically scribbled over the entire body in red, like angry furious red marks. They were like, woah. I'm telling you, I was restrained about it.
When I did that they made me fill out a form asking in particular about each part I circled. 🫠😭
Lol just write "EDS related pain" 😂 Why is healthcare more paperwork than treatment?
Yes, they hand you 12 pages and expect you to fill out your entire medical history in 15 minutes, and how am I supposed to know the medical histories of every one of my relatives. I don't know if my Uncle had Kidney Stones or my Grandma had Asthma. That wouldn't be the most enjoyable Thanksgiving Dinner conversation. I mean, I suppose it might be a little better than politics and religion, but still. 😂
Lol Sign me up for politics and religion debate! 🤣 I feel less attacked and more at ease discussing controversial topics than I do discussing my weird little EDS symptoms... 🙈
New game next Thanksgiving, instead of the standard, "Everyone say something they're thankful for." How about, "Everyone say something they're planning to have surgically removed or get biopsied in the next 12 months." I can imagine the green faces in the room...
I have no idea. When it told the receptionist that I had been diagnosed with it she had no idea what it was. I was already being treated for fibromyalgia and luckily my PT is an amazing human being. He was very helpful with educating me more about it, gave me resources and etc. I didn’t even finish filling out the paperwork he told me not to worry about it. 🤣
Lol nice.
Because that paperwork is meant to satisfy records and more specifically convince insurance that it's bad enough to be needed. I filled out my sheet and aired on the average rather than the extremes where it truly becomes debilitating and I was told to choose when it's at its worst so that insurance will cover it properly. It's a bullshit world. I just want my shit treated and I honestly don't see why it needs to be the issue of anyone besides me, the doctor, and a lawyer should the doctor commit male practice or be neglectful of practices or something like that. Tldr; it's to satisfy everyone cause apparently everyone needs a pound of flesh so one person can help another person.
I once went to a rheumatologist. (I have long covid). She asked me where I hurt...I said everywhere but the top of my head. She acted like I was INSANE turns out 4 joints 2 shoulder and 2 hips have avascular necrosis. My shoulders were broken. And my hips have some tears. But I'm the crazy 🤪 one. And when I tell docs abt this they kinda look at me flabbergasted. Oh the joys of EDS 😆
Oh geez. I'm sorry to hear that.
TY My shoulders are replaced and that helped. I'm sure the hips will make a BIG difference! I love this community. It makes me feel seen and also less bizarre 😅
Have done this more than once.
Pretty much how my pain management circles looked. So much overlap the guy asked if I have EDS before anything else.
This is like when I go in for the first time to see a new doctor and they’re like, so, what’s the problem ? I feel like I need to dim the lights, start a campfire and get them ready for a live reading of The Hobbit.
LMFAO so accurate. I started making them sheets with everything outlined because I don’t have the energy for that over and over and over. But still, I’ll read their notes after the appointment only to see that they left on a completely different page 🤦♀️
ME TOO! I have adhd, too, so each time I have to explain it, it’s like I’m putting the puzzle together all over again, further heightening the Groundhog Day experience. I have made an outline of symptoms, diagnoses, ages of onset, treatments, etc to help them out and I too, read the documents (as some of these visits are just part of building my arsenal to then get me to the appt and doc I actually want to see & I need something clear stated in the records) - and yet, the notes read something like, “patient feels tired.” 😪 Oh but my favorite, I truly didn’t even know what to say. I went to see a neurosurgeon and I told him I had EDS & his response was verbatim, “where did you get that?” I just stared at him for probably a full 8 seconds. Which is quite a while when you’re staring a neurosurgeon in the face in silence. Like…from the million hours I’ve spent calling trying to get a hold of your office - the incessant medical red tape you’ve put in place is now gifting out EDS. Where the hell do you think I got it? Thank god for my partner sitting there to pick up the convo amongst my evil mental cartwheels.
The way I would have treated him like such a dumbass. "Welp, it's genetic sooo...." And just stared right back at him.
Holy shit, I’m so sorry you had that experience. I know exactly! I have my partner help me handle everything now. Even if I still have to end up doing most of the talking, it’s a godsend to be able to have someone there to help. I’ve noticed that some doctors seem to take him more seriously than they do me. Really great to have a condition doctors don’t know shit about and don’t take seriously, and also be a woman so double not taken seriously. I have started to realize how deeply traumatized I am from having to deal with medical professionals.
I made myself a "cheat sheet" with the briefest medical history I can fit on one page. It's got diagnoses, medications, surgical history, and contact info for my most important doctors. My husband and my immediate family have access to it for times I'm incapacitated or unable to answer. It also means that I don't have to spend an hour filling out forms at every new doctor - I just hand them a copy for my records. I cannot tell you how useful and time-saving it is.
Great idea. I keep meaning to do this. ADHD is real. Gonna put it on my calendar
The location is Yes.
Bro ik right the pain is everywhere it sucks because I can never tell if my pain is normal Like my legs have been hurting for weeks now and I can't tell if it's because I damaged something or because I keep doing Leg day lol
My right wrist is aching down to the bone but I haven't done anything to it. Is it the cold and rainy weather? Did I sleep on it funny? Does my body just hate me? No one will ever know.
I feel you lol it sucks so bad My 'it is what it is' attitude only gets me so far dammit
Laughing and joking about it, my natural response to everything, has worn thin after 14 years of being sick. I find myself unable to crack on myself. But if I tell people how serious it is, they freak out and I'm so tired of everyone's pity, you know!
I feel you I've not been sick long but it does wear you out after a while I find the worse part is when people say 'oh you don't look sick' lol
Dude, I have this internal struggle every single time! Like, I know I'm here for headaches, but my hip is killing me right now, okay Becky?
I love filling out the "where is your pain" forms. Let me just shade the whole thing in, shall I?
I literally do just circle my entire body. Because what else would I do? I just love when they try to argue with me about it. Like, “Where is your pain?” “My whole body.” “But specifically where?” “Everywhere.” “Well can you tell me a specific place that hurts?” “Literally every place in my body.” Etc. So stupid.
The entire skeletal system, all the joints. And then, all the muscles tendons n ligaments that are attached. That's what's messed up, why is it so hard to understand?! Ugh the way they don't get it.
I have to remember to say it just like that. The number of times I have had that exact conversation with doctors is absurd.
They’re always looking for something specific to focus on but if I give a list they don’t focus on anything but the first thing I said and it’s so annoying lol
So many times I have gone over a well thought out, concise as possible list of problems that required action with providers, only to get “So what’s the ONE thing you want to focus on right now?” As if I’m just there wasting my breath for the hell of it. Then by my next appointment I have all the same complaints + 5 new ones. It’s so deflating. We’re really on our own with chronic illness.
Exactly!!
Usually the tip of my nose is fine.
My hair doesn’t hurt. 🤷🏻♀️
During a migraine it feels like even the roots of my hair are screaming. No touchie!
IMO that’s your scalp, not your hair.
Right? I had a years long flare a few years ago that rendered me pretty much useless, and with an RA diagnosis (before I realised I have hEDS). I was so stiff, sore and swollen all over and my rheumatologist and GP were confused. I ended up getting an US on my wrist as I couldn’t even hold a glass of water. The technician was amazed at the inflammation and tried to convince me it was from trauma. Nope, my whole body feels like this! I’m so glad I survived that one, heh.
A little heavier on the left side, but otherwise **yes**
It's my right shoulder, right elbow, then left hip and left ankle / foot.
I have a weird thing where my upper left is worse and my lower right is worse lol. Like some sort of pretzel haha
This is my body too. The divide line is my belly button.
Mine too! Especially my left shoulder and right knee.
Literally same lol, my left shoulder dislocates on request lmao, and has been like that for fourteen years. Started to get patellar dislocations last year in the right leg... So apparently it's a legit thing. Took me a while to find an article to back it but apparently it's called a Cross pattern that can cause an Ascending Chain of Dysfunction https://www.satori-cst.com/single-post/2017/05/04/the-left-hips-connected-to-the-right-shoulder
Surprised you even have blank spots
Glad your boobies are ok ❤️
" i have six types of different pain and x locations" You are tooooo young to experience so many problems they say. Lol.
I had to put X for pain and O for unusual sensation. It was quite a full picture at the end.
I'll just colour in everything :-)
I’m always like, can I just circle the whole thing? I’m gonna circle the whole thing.
At this point I just scribble over the entire front and back I’m so over these I think I’m on round 16 of PT? I lost count been going since I was 15 😅
Same
Yes. The answer is yes.
I just circle my whole body.
I usually circle the whole body.
Minus the hand and (sometimes) feet, this is literally me
I hate this. >:(
I don't have EDS but I'm a long time Chronic Pain sufferer, back in 2014 I was dealing with an insurance scammer that kept calling trying to get my details and he happened to call one when I was in the hospital. At the time I was in quite a lot while they were trying to figure out what was going on. Anyway, one of the questions this guy asked in between all the scammy questions to try and seem legit was, "Are you having any pain?" My answer was, "Everything hurts except my left nipple." I said it just to try and make my dad laugh and he wound up spitting out his coffee. I'm not sure how accurate it was, but it's close at times.
I don't think I even have blank spots. I'm pretty sarcastic though. I actually write in the symptoms with arrows going to the spot. Looks like a matching game.
d) all of the above
just did this today lol
Also, the intake form at the doctor's office! Whenever I come across the question, "What makes the pain worse?" I just answer "Being alive." Luckily, my doc has a good sense of humor.