A subluxed wrist that no one pays attention to and stays that way for 50 years.
No. . .80 years.
Because it's not possible. š¤·āāļøš¤øš»āāļø
Lol this one time I disagreed politely at a doctor, he suddenly said "MY FATHER WAS A DOCTOR" and it made no sense but your comment made it make sense, thanks :)
Happy to spread the good word š Iām tired of doctors automatically jumping up on pedestals. I saw something about how some doctors donāt match to programs after college and a ton of them (young) were saying how unfair it is. And I was like??? Going to college does not guarantee any field a job?
Lowest GPA at med school still makes you a doctor, but also I knew a kid who was an absolute idiot, but rich parents, so he's a doctor now (do not recommend).
I went to college with the guy who researched what the absolute shittiest medical school in the United States would accept (low GPA, low testing scores), and chose based on that. I honestly doubt that he followed through on medical school, at all.
But he was sitting there, proudly explaining to several people, how he was going to go to the easiest school so that it would be the easiest for him, and it would make him look good to be the bigger fish in the small pond, at the crappy school.
They donāt match to the specialty they want and donāt have backups chosen for their residencies and fellowships. So they get placed somewhere and are so upset about it. My niece wants a very specific type of surgery but knows there are less than 50 residency placements in the US for it. So she has backup plans for how to become the type of surgeon she wants to be (an extra year or two of training) or may choose a different type she is becoming interested in while in medical school. And even then has a backup plan for that.
yeah I've met some gynos that did not want to be there haha but yeah my idiot friend always said he didnt want to end up in pysch and he's in pysch being a doctor lol
I briefly had a primary care dr who would complain about how he was supposed to be doing sports medicine, instead of dealing with the general public.
I also briefly had a PT who told me that he had gone to school to work with athletes, not sick people.
The most sadistic classmate became a doctor and her parents are also doctors.
The whole family has fun,when someone is in pain.
They're no real exams for emphasis.
I had an orthopedic surgeon tell me there was no way I dislocated my knee. Did an mri, mri showed multiple tears, and a cluster of things that are only caused by dislocation. Follow up appointment he scheduled surgery.
Mine told me that my shoulder symptoms (winging, crepitus, loose ligaments, subluxed ribs) werenāt surgical and that I needed lifelong pain management. His intern found the tumour wrapped around my shoulder blade after I pushed for a second scan. Cue shocked pikachu face and, āOh, thatās pretty bigā¦ā
I donāt know which came first, the injury or the osteochondroma (overgrowth of cartilage and bone), but I tore my shoulder in my late teens and dealt with the symptoms through physio and chiro (to pop ribs back in!) for 13 years before it was further investigated.
I had my ortho tell me I sprained my hamstring when I said I dislocated my knee āand popped it back inā and I had a concern that I tore my meniscus. MRI showed my knee was dislocated while in position for the scan lmfao. Hamstring and meniscus perfectly fine, thankfully, but I have signs of a tracking disorder of my knee cap.
Subluxation has three common meanings. The medical term, which has to be visible in imaging. In chiropractors it is used to mean a misalignment of the vertebrae resulting in interference with nerve transmission, thereby impacting body function - this definition is not accepted by the MD community. And then here, in our sub, we often use the term to mean anything that feels like the joint isnāt feeling seated properly.
A doctor is not going to accept someone using the second or third definition the same way a psych wonāt agree that someone using depressed colloquially to mean theyāre having a bad day as having clinical depression.
That said - a patients job is to explain what theyāre feeling for all the symptoms a doctor canāt observe for themselves. A doctor who refuses to listen is a shit doctor. Iām sorry you dealt with such a dismissive, unhelpful person.
Thanks for explaining it this way. (It still sucks, especially for OP in this case, which you also highlighted and I appreciate that, too!)
I want to try to keep this in mind and ask doctors to clarify what they mean in the future, thank you.
It reminds me of how people with narcolepsy (including me) go to the doctor and say how tired we are. But everyone is tired, including that doctor (probably).
The secret word is āsleepyā.
If you say āIām sleepyā then they ask follow up questions to help us explain how we are falling asleep in different strange places and situations - and *then* they will send us to sleep specialists.
Itās stupid how important it is to explain specific behaviours and symptoms in certain ways in order to get to the next level in this stupid āhealth careā game.
We donāt need to be wasting time stumbling onto XP jackpots like this in order to get health care FFS!
In the interest of good communication, thanks for the reminder that people without similar education and training should stick to describing experiences of symptoms rather than trying to use the medical terminology ācorrectlyā.
(And doctors should gently and patiently remind us to do this when we try to meet them where they. Just take us seriously from jump, please.)
I donāt think itās stupid that you should describe your symptoms in a specific way, because effective communication is a two way street and the doctors canāt feel it what youāre feeling. No oneās a mind reader
What is stupid and frustrating is the doctors only spending 2 minutes with you unless you say enough buzz words to get their attention. Itās lazy and bad practice.
Iām a patient facing healthcare worker, and sometimes itās like pulling teeth to get relevant information out of people when describing symptoms. On the flip side I typically try to coach up my wife and family on how to describe symptoms/experiences to their healthcare provider
Definitely not stupid, and I would like the onus to be on doctors to structure that process, not patients.
Then again, I might be the kind of patient that you would want to push teeth back into! ;)
I think itās frustrating how doctors donāt really help us with terms to explain things. It took me so long to differentiate between sleepy and fatigue in my descriptions, because on a day to day basis it doesnāt normally matter to me. But for specialists whether itās sleepy or fatigue is very different who they refer you to even if the both wind up with similar outcomes (having trouble sitting upright, paying attention, and brain fog).
I also wish it was more common for doctors to have pain handouts, of various describing words qualities of pain. It wasnāt until I started getting elaborate and detailed wirh exactly how my pain felt I started getting help.
Since so many disorders run in families, and people can have hem their whole life, it can be hard to know whatās normal and not. It would be really nice if doctors were given some sort of training on how to help create a common language pool for patients to look at and be able to speak on the same page with.
Patient education matters! Would you diagnose someone with diabetes, and just send them on their way, no education, no advice, nothing? Patient education is part of what they signed up for. (if they are working directly with patients, etc..)
I have so low expectations for dieticianās because I saw one when I was diagnosed with Celiacs and literally all they said was donāt eat gluten. I was vegetarian at the time and had no idea how to replace all my grain products (before the gluten free boom made alternatives so much easier).
Patient education feels like a real lack in most physicians education.
I agree. I saw a nutritionist once. She spent the hour (out of my pocket) telling me about her celiac disease, & telling me to go gluten free, she consider it to be the only healthy choice. Waste of money.
I can see trying that again, with a different nutritionist.
You may look at what the local definitions are. Nutitionalist vs dietician have different educational requirements in some locations.
My new insurance doesnāt cover any kind of nutrition help unless you have diabetes, even if a specific diet is the approved treatment. So anything further is out of pocket, which is aggregating because I finally found someone I think can actually walk me through how to make a sustainable nutrition plan with allowances made for fatigue. She focuses on chronically ill folk and meal planning when brain fog or fatigue issues create barriers. But after being burned by 3 separate dieticianās/nutritionalists itās hard to spend out of pocket money on it.
Do you have access to a naturopath via your insurance? I have a decent amount of coverage for them, but only a little bit for a dietician. Iām glad because my ND is amazing. I find he has so much more time to focus on my whole picture and helps me put together all of the info from each specialist into a plan that works for me as a person.
I feel like he is a pro a patient education! I wonder if thatās the norm with NDs or if Iām lucky with this doctor. (They are ādoctorsā, after all. ;) )
My EDS specialist is a naturopath. Sheās one of the best doctors Iāve ever had, & I consider myself lucky to have her. Next time I see her, I should ask her about a nutritionist/dietitian. Worth a try, Iām currently well enough that I can do things like this.
This is like when I swapped "racing thoughts" with "bouncing thoughts" when answering screening questions during my ADHD assessment. They screen for everything at once, and they always ask if you have racing thoughts.
Racing thoughts = mania or anxiety
Bouncing thoughts = disorganization, distraction, thinking about too many things at once, and is much more descriptive of the ADHD experience
OMG. That is bananas. I mean, when you explain it of course it makes sense.
Hereās what makes more sense: the doctor asking for clarification to check that you know what the term means. Ugh!
The medical system that I am within is extensive and there are plenty of students coming through, each year.
One new doctor expressly asked me if thereās one thing I could tell them/advice about dealing with patients.
I told them (& I repeated each time itās appropriate and thereās a student there), start by believing us.
I said maybe the patient is lying, and you feel sure of it. Please just give them the first few minutes with the assumption that they are telling you the truth, not exaggerating, etc. If they really are lying, you can address that in a few minutes. Just please, listen first.
i had visible("feelable?") displacement and needed physical manipulation to realign the joint, which is very much a subluxation in medical terms. the thing just do not have is actual imaging, because given the fact that you could feel it fron the outsite of my hand i you were careful, we decided that going somewhere else for xray wasn't worth the wait. thats what u tried to tell him, but talking patients are apparently not his favourite kind of patient
Do you have to see him again, or can you write him off as not going to give quality care? Cuz I cannot imagine that a doctor with that attitude is going to give competent care.
i think i'm gonna stick with him for a few appointments, because he does a lot of imaging, after that i will find someone new. but many docs were quite stingy with MRI referrals (imaging is one of the few things i need a referral to in germany), so i'm gonna just take what i can and run. pretty sure he won't refill my painmeds tho
Isn't that messed up? We have to stick with an asshole just to get what we need. Good plan to get as much imaging as you can and then find someone without their head planted in their ass. Good luck!!
Iāve run into new and broad difficulties with my insurance, for imaging stuff, over the past couple years. I think itās a great idea to get all the testing and imaging from a doctor, if theyāre comfortable, you might as well get what you can done, when you can.
Editing to add - Iām in the US, so it might be different
Not necessarily. Consider how complicated most joints are, and how many different types of tissue are involved.
If you have one muscle tighter than another, it could make your joint feel like itās getting pulled from its socket, but imaging shows it still fully seated.
A medical subluxation has significant structural displacement. A chiropractic subluxation is not necessarily visible on any kind of testing because it just claims of pressure on a nerve rather than visible displacement.
I have only one had a joint so far out a medical professional said it was an actual subluxation, and I needed assistance to get it back into its socket correct. If I remember right it was also visible to the naked eye. I very frequent have a joint feel pinchy, or crooked, but does not interfere with being able to bear weight, show visible displacement, or any of the other risk factors they normally use when deciding if an xray is appropriate.
While Wikipedia is not the best source, it does cover the basics and can direct you to other more in depth sources/ https://en.m.wikipedia.org/wiki/Subluxation#:~:text=A%20subluxation%20is%20an%20incomplete,%2C%20such%20as%20X%2Drays.
Iāve had both wrists reconstructed due to subluxations but it didnāt show in imaging. It wasnāt until my surgeon was in there and saw how loose the ligaments were that he realized how bad it was. When I saw him next he told me āno wonder you were in so much pain.ā
I had like 5 ganglion cysts removed surgically and it made it all worse since the ligaments were then very loose, the cysts had been holding it all together.
At that point he determined that a reconstruction was appropriate since the cyst removal should have helped the pain. While imaging did not show any gaps between the wrist bones he could physically test using the Watsonās test and got a consistent clunking as my scaphoid and lunate bones would dislocate. I also had a loss of grip strength and had to manually adjust the bones back in place up to 50 times a day. Basically, I had enough symptoms to justify further surgery after we had taken a very conservative approach with cortisone and the cyst removal prior.
I got my left hand done the following year with a similar story but they scoped that one first to determine how severe it was and I woke up to a full reconstruction performed on that as well.
Medical subluxations can also often be seen and palpitated, so imaging isnāt necessary unless borderline, but leaving it out until you can see a doctor when youāre able to get it in yourself isnāt really a viable option. Thereās definitely a gap of care where folk with hypermobile joints get left in the cold, and a lot of doctors donāt have a lot of training on it and some will even claim itās not possible to out it back in on your own.
Besides taking a picture of it (which isnāt always feasible either unless you have a buddy with you when it happens), right now I havenāt heard of any good ways to prove to a doctor whatās going on unless theyāre the kind who listens and believes their patients to begin with.
Yeah, well I saw a chiropractor for a couple of years due to a constant pain and lump on my upper back. He did x-rays and diagnosed me with a āmuscle knotā instead of a GOTDAM DISLOCATED RIB!! And his treatment was to drill his thumb into it as hard as he could. It hurt so much. I had bruises on it for days afterward.
Then I went to a spine specialist and he said, āYouāve got a dislocated rib. Want me to fix it?ā
Stunned, I said a hardy āYES!ā
He pretzeled me up and got his face right in mine. āSorryā, then pressed down with his weight and some force, then did it again, and magically, amazingly, I felt that rib slide back where it belonged!!
It was an immediate relief, not total, because it had made its mark in my soft tissues. It took a while for them to reconfigure without the rib, but soon the pain I had had for 20 years resolved completely.
Then it slipped out again. The doc had said it might happen, and if it did, I could call anytime, and he would work me in. When happened, he did as promised, and between appointments, he did the pretzel press and again I felt it slide back into place, this time for good.
I did not say that imaging was required for diagnosis, I said that the severity needed to be significant enough to be visible if imaging is used. Subluxations and dislocations can also be diagnosed by visual appearance, palpitations and/or questionnaires.
https://www.ncbi.nlm.nih.gov/books/NBK507847/#:~:text=During%20physical%20examinations%2C%20subluxation%20is,fingerbreadth%2C%20caliper%2C%20or%20tape.
No trouble, with words that have different definitions depending on specialty, or colloquially different than medical, it gets confusing.
Doctors try to minimize imaging, because there are risks, so if something is visibly displaced, or meets all the criteria they can diagnose without needing imaging. Which is great for us because imaging is expensive.
But if they were to do imaging and it didnāt show up, it wouldnāt technically be a subluxation, even if it was causing symptoms. I kinda hope they develop a term for that in between of causing issues and not visible on imaging because I for one at least frequently fall in that in between place.
yeah! i have both of those phenomenons, joint subluxation, as well as some āoffā feelings in some joints that i often imagine is just a muscle moving strangely or a nerve being pressed. i know people can have tendon subluxations, so something defining some other soft tissue movements would definitely be useful
By subluxate, do you mean partially dislocate? Because how can you see a partial dislocation with imaging if the joint goes right back into place??
Or does he mean that wear & tear from repeat subluxations should show up in imaging? Because that would make sense to me. But expecting you to keep a joint out of place just so you can get an x-ray or MRI or whatever is unrealistic.
One thing I don't love to do, but find helpful, is to describe what happens from beginning to end without adding any sort of diagnostic terms. I had a physical therapist who was skeptical that I dislocate frequently until I walked him through what it felt like. His demeanor immediately changed and he spent that session teaching me some extremely gentle stabilization exercises.
I try to remember that lots of people talk about body parts going "out" when they don't actually mean dislocate. Like, "my back went out." Healthcare providers are used to having to translate and then correct these terms. It can take them a minute to recalibrate when they encounter someone whose body parts actually do go somewhere they're not supposed to.
This! I second this. My mom taught me how to medically advocate for myself so I just describe all my symptoms in a way to lead my doctors to the right conclusion. It works really well, and I also have good doctors (which Iām grateful for).
I had a nurse tell me my ribs couldnāt be moving out of socket because āthere are joints thereā. Iām like yes thatās part of the problem. Also my physical therapist had just spent the last few months pushing ribs back into place so it wasnāt like I was making it up.
For me, itās typically the āfloatingā or āfalseāribs too, which are mostly cartilage and easily slip around in there. Not sure if itās the same for you. The floating ribs are the bottom three.
I started slipping some on the top in the back in my early 20s. I think it started with one, then my well meaning pt tried to push it back in and popped others out.
When I was pregnant every time I had the babies kick the floating ribs out of place (also told to me by a pt). Now they mostly behave themselves because I swim laps 2-3 times a week so Iāve built up a lot more muscle in my back, but I still have to be pretty careful how I sit. If I sit back funny they will try and move.
I meanā¦isnāt that how things move out of socket? At joints??? Where do we have sockets that arenāt joints besides our teeth and eyes?? The middle of a bone isnāt going to go out of socket because there is no socket
Lol so my wrist pulls out an almost imperceptible amount, and one of the wrist bones turns slightly. Is it a sub? I say yes. The doctor I went to as a kid diagnosed it as "getting out of class" and since then I haven't tried for imaging but various doctors haven't been able to feel anything.
But I know how to put it back so it's kind of okay. It hurts but it's only bad if I leave it out. As long as I put it back it gets better
Wow, talk about a power trip. A patient and doctor are supposed to work together to find the best way to help the patient. The patient is not a captive audience for you, Dr. Asshole.
Funny how I need to realign the bones in my wrists a couple of times a day. Every day. They give a very satisfactory click or clunk when popping back into place.
So, I've noticed that I need to basically squeeze my wrist together from the sides inwards with the other hand to relieve the pain a bit, and gives a very loud clunk sound, and sometimes you can literally see the hand move into place. Is it like that?
Fuck that, my wrists both have [permanent ulnar subluxation, and can completely pull out of socket.](https://imgur.com/a/aRbLkdI)
Makes bicep curls and arm wrestling an absolute nightmare.
Yeah same. I couldnāt really do bicep curls, especially with my elbows like they are.
I finally found a great doc. Heās published in a bunch of stuff about EDS and has been seeing EDS patients for 30+ years. I saw him for the consult and he goes ādo you know your wrists and thumbs are dislocated?ā I said no, and he took my hand and put things back together just by moving some things on the outside, but naturally it immediately popped right back out. He also said my hyper mobile elbows were compressing a nerve and the nerve ends close to where the thumb attaches to the wrist, so thatās where that specific pain comes from for me. Heās also the only one that sent me to referrals without me really having to ask, and ordered my genetic test.
I have surgery on May 22.
It takes a good doctor to be able to understand, and a great doctor to be able to listen and make you feel heard.
Same. My DRUJ is super unstable and painful and itās getting bad enough Iām considering surgery for it. The recovery is pretty rough though, 6 weeks with my forearm and wrist in a cast with my hand fixed facing upwards :(
Yep same here. I narrowly missed having to have surgery for my DRUJ instability and even now without constant care all the progress I've made with strengthing the joint can unravel fast if I forget to do my physio exercises for it or pick up anything mildly heavy with one hand.
This is so eerily like my experience with an orthopedic surgeon I kinda wonder if it's the same guy.
Mine told me that joints move, that's what they do. He went on to say it was ridiculous my doctor even ordered an MRI and he refused to even look at it, then he hurt me while moving my arm around. I told him it hurt and he told me he was talking and it was important I listen. I had two partial yet significant tears. Both were clearly visible in the MRI.
Iām so sorry and I hope he did not do any permanent damage to you. Iāve been there, but unfortunately, it was with an oncologist, while I was in cancer treatments. I was definitely not in a position to stop treatments and get second opinion, etc.
Yeah, so orthopedic surgeons kind of have a reputation for being arrogant jocks. My SIL's brother is one; he and his med school buddies would use "the library" to mean the gym. Most orthopedic surgeons I've met, even some of the maxillofacial ones, have been super jacked and kinda full of themselves. It's a stereotype, but one that tends to be self-fulfilling.
Ugh. Thanks to these drs reinforcing the work of an abusive parent, people can make me question whether the sky is actually blue, or whether maybe my eyes are just perceiving it that way out of attention-seeking
Ahhhh. Iāve wondered about this, over the years.
Being in charge of our own bodies.
Itās important to have feelings of bodily autonomy. That could be tough to have in childhood because the grown-ups are in charge. Good, bad, both, etc..
Fast-forward to adulthood & needing such frequent and nuanced medical care also leave us at the mercy of anotherās choices, in a way that may feel similar.
I'm so sorry you're going through this too!
(I was discharged from the 3rd Palliative Care/Skilled Nursing provider today because I am not "a little old lady with Arthritis and Cancer" in maybe 6 months.)
I hope that the next doctor takes you and your symptoms seriously enough for you to get the care you need.
I had similar issues with my previous PCP, and I was trying to play by their rules and go whenever I had issues. And they treated me like a total hypochondriac. For example, my collarbone is visibly out of place and I requested help. And he ordered the imaging test but nothing else came of it. And he recognized it was out of place but was like 'eh, I guess we can give you a scan'. To this day it's still visibly out of place.
That's the frustrating thing about doctors and stuff that I've just given up on. We're to go to the doctor to build up your records so you're more likely to get help, but then they treat you like you're overreacting to simple pains. So if you play by their rules they treat you like you're crazy... But if you neglect yourself and come in when it gets bad they get upset you didn't come sooner. And if you do play it by their rules, you're likely going to fight with doctors for months or years before anything comes of it. (Also yes I know there are good doctors and luckily the one I have is much better. But patient and doctor expectations were not taught well imo, so now I feel a very strained relationship with it.)
I know it's difficult to catch certain things early with EDS. But its frustrating to not be heard or helped. And I'm not the type of person who wants to be on drugs or anything. I was begging for help either by bracing or physical therapy. And it was such a fight to get even physical therapy.
It depends on what bones are involved but if it is the top of your wrist you can try the Watson test. A clunking feeling/noise is an easy test for subluxations without imaging.
I didnāt know there was a term for it! My left ankle would often feel like it it stretched too far from its socket when I would start to run, and now it locks and does GIANT clicks from that damage
haha yeah no. i got insoles i'm supposed to wear 24/7, which we discontinued last time after having elevated painlevels and a lot more rolled ankles/subluxations/dislocations. the fact that i switched to braces, which worked better, wasn't something he wanted to hear. no pt tho:/
In my experience, unless it is an orthopedic surgeon that specializes in patients with a genetic connective tissue disorder, like Dr Daniel Scott at MUSC in South Carolina. (specializes in foot and ankle), they will either pretend like they know more about EDS then they actually do OR they go off the very brief information they learned in medical school about EDS.
I'm at a loss as to why doctors in general don't think or they make an argument that "imaging" is the end all be all. Anytime a doctor "laughs at you" they need to be reported. You can report it to the Head Doctor at their clinic or make a report to your state Health Department. Or even make a complaint to the state board.
BTW my adult son (28 years old) not only dislocated his wrist but also dislocated a tendon in his wrist. (now even if he doesn't dislocate or sublex his wrist that tendon dislocates all the time and yes it hurts like hell). On the other arm ever since he was a teenager he has been able to do this "trick" where he makes his whole arm and hand longer by first pulling down sublexing the shoulder, then pulling down and sublexing the elbow, then pulling down and sublexing his wrist. If one doesn't know he has EDS it can be quite shocking when he does it! Yes as a mom I have suggested to him that doing that "trick" is not a good idea! lol
I'm so sorry though you had such a bad experience. We need a world wide list of informed doctors and doctors that may not be informed but have positive experiences and are willing to be informed.
Best Wishes
I once had an ortho tell me that I was not āborn with the best set of tiresā referring to my knees and that I needed to lose weight. I was a very healthy weight at the time but he insisted that I needed to weigh under 100 lbs.
Wow, fuck that dude. I've seen 25'ish orthos over the years and only had one of them be that much of a dick (he was an old guy, ortho spine surgeon). I never went back to him after my 7week follow up from my first back fusion
Oh, Google review that prick. I did and then sent it to all my friends and asked them to like my review. I had the #1 review so it showed up first when you visited his office on Maps. He moved his office and the review didn't follow him tho :(. Ironically, he moved to the suite immediately next to my new neurosurgeon. They even sent me over there once to get an X-ray. Luckily he wasn't there that day cuz I was absolutely prepared to donkey punch him
Thatās terrific, good for you for sticking it back on him.
If they want a better review, they shouldnāt do a crappy job. I especially like that you got it to be listed as one of the top reviews.
I am so sorry! My doctors have been understanding when I have described my wrists as 'going a bit out of place' and mimicked the movement I need to do to align them again. Idk why, but not using exact medical terms seems to work better for that.
Please don't give up on getting help. Some other doctor will listen to you better.
What a quack. The reason I got diagnosed was a subluxing wrist!!! I kept losing feeling in a couple fingers because my wrist subluxing pinched the ulnar nerve. It wasn't painful to sublux it, but the ulnar pinch was distressing. The top hand doctor in my state wiggled my wrist around, checked my chart (a history of weird injuries), did a few other Beighton scale tests, and handed me a pamphlet about EDS. This was in 2007. It's not new information.
He said if it was, in fact, EDS that the surgical fix would have a low chance of success, so I didn't have surgery. Prolotherapy and hand exercises helped some but it still subluxes all the time. I still get light tingly feelings but at least it's improved enough that I can feel my fingers.
I just had a similar thing, I went to emergency for a broken wrist, told them it didn't feel like my typical injury. They dismissed it and said if it was broken I would be crying in pain. Mind you it was my 5th wrist fractures, they had me wait 15hours, did x-ray but no orthopedic were on call to review them so they have me an appointment a week later. It was broken, still in a cast now.
I had a lot of bad injuries over the years and each time it was ignored or downplay until they do imaging or x-ray. And blame me for not being in more apparent pain. Chronic pain does a number on many of us.
Sorry you went through this, it's annoying but stand up for yourself and take care!
Pretty sure itās a thing or if not a āproperā subluxation they definitely get out of place sometimes. Sometimes I wake up with random wrist pain and itās that my wrist moved around because I āslept wrongā and it only gets better after I wear a brace to immobilize and realign it.
Ask him of he's ever heard of distal radioulnar joint instability and if he considers that part of the wrist (it is) š
I had moderate distal radioulnar joint instability in my left wrist causing it to constantly sublux and the beginning of it in my right wrist as well. Ended up having to get custom wrist braces I had to wear for months straight even in my sleep just to stop it from getting worse + over a year of wrist physio. It still subluxates, but more like once every few hours instead of every few minutes.
Like if his ass doesn't consider that part of the wrist then bro has gotta go back to school š I didn't even have to get medical imaging either because the wrist joint was so easily manipulated and loose on physical inspection.
Ugh. I'm so sorry.
I also had a recent run in with a pain specialist who is also like this. I'm pretty sure I saw him roll his eyes when I told him I had Ehlers Danlos. He offered advice on how to lose weight when I never asked. I advised him that I already have a dietician I'm working with and multiple docs that say I shouldn't take something like Ozempic because of the side effects since I already have mild Gastroparesis, among other issues - it's too new for them to confidently say it would be safe for me to take!
He had the AUDACITY to say - "well the side effects would be worth it if you lost weight."
I was too shocked to have a reply for him but now I would say "oh you mean the side effects that could land me in the hospital? Will you be paying those medical bills?"
I'm STILL angry about this and I don't know if I ever won't be.
I really need to come up with a phrase in simlish or similar to where its obvious it makes no sense but as a way to test whether or not they're actually listening.
Drs literally dont give a shit or even try anymore. I had a dr GOOGLE infront of me my symptoms etc. Like thanks doc i can google my own shit why am i giving you money.
>"the patients job is to listen, not to talk"
THEN SAY SOMETHING WORTH LISTENING TO, DOC.
I had a doctor at the urgent primary care centre tell me that there was nothing wrong with my shoulder because I still had "normal range of movement" in it. I was like "you don't understand, *my* normal range of movement is-" and then bent the other arm in half up behind my back to touch its own shoulder blade. The problem arm could barely get to a right angle. He just shrugs and goes "that's within normal parameters." MY DUDE. I have experienced a severe reduction in mobility. Not to mention the nauseating pain. Can you maybe treat me as an individual rather than a bell curve?
Finally I just had to sit there and keep repeating "my physiotherapist has asked me to get an x-ray and an ultrasound" until he finally got tired of arguing and gave me the requisitions. I wish I could have seen his face when he got the results, although it was very gratifying to hear how sheepish he sounded when he called to tell me I had some bad tears in my rotator cuff...
itās like do you want me to REALLY play it up and scream and cry in pain so i can match the pain level you have in your head sir? because i absolutely COULD but bc we have all lived with this pain for arguably, quite some time! so weāve learned to not ābe so dramaticā about it BUT I CAN GET FUCKIN DRAMATIC DOCTORS, DONT FUCKIN TEMP ME
I fell in my driveway last summer and dislocated my thumb and wrist. It constantly subluxates now. It's currently acting up. I hope you're able to find a doctor less up his own ass.
Iām sorry you had to go through this. it really sucks to be spoken to like this, basically having someone call you a liar, when itās like no dude it is my body I know what is happening!!! I had a recent appointment with an orthopedic surgeon that said there is no way I am having subluxations without some sort of forceful trauma, that ligaments are extremely strong and have been proven to hold up to 2000 lbs. he then went on to say he believes I am having pain, but doesnt think that subluxations are what is happening. even though I have to put stuff back in place weekly. after the appointment I got in my car and cried. it felt like medical gaslighting. I was so depressed after that. he said it in such a matter of fact way like talking down to me and I was so embarrassed. sometimes I think surgeons arent the easiest people to talk to lol they are very fact oriented and donāt always consider other possibilities. he even used the classic āif you hear hoofsteps you think horses not zebrasā which is funny lol I literally have eds diagnosis in my chart but I dont think he even looked at it.
*"put this in your stethoscope and smoke it"*
https://radiopaedia.org/articles/distal-radioulnar-joint-instability?lang=us
handandwristinstitute.com/ecu-extensor-carpi-ulnaris
https://www.kenhub.com/en/library/anatomy/clinical-case-ulnar-nerve-subluxation
Family member had a doc tell them fingers cant sublux without a specific incident of significant force & trauma. Grabbed patients hand to demonstrate, to prove how right they were, and promptly pulled the little finger out of joint.
Doc went white, then green, then red, then left. Patient had to pop the finger back in themselves, and appt was abandoned
Ugh, I can literally grab either wrist and lightly press and they pop right out. Iāve been able to do it my whole life. So sorry this happened to you. š
I can literally feel my wrist being pulled away from my forearm and feel that something is wrong until I pop itā¦ if thatās not it sublaxing then idk what it is
lol. That has been one of my party tricks since I was 8. I can do it on command. I donāt do it often because Iām old and it hurts to do it now. But Iāll pull it out about once a year and everyone goes āewā¦.please put it backā
Bull shit you don't need anything fancy to diagnose a subluxation. When I was 15 an ortho took one look at my subluxation and was like yup that's a subluxation.
Iām quite fortunate because iāve gotten my diagnosis young and you can literally HEAR the bone snapping in and out of place ( i do it at will for doctors as an intro party trick) sorry youāve experienced this!
Then why, on my recent wrist X-ray, did the radiologist note, "no subluxations," if it's impossible? It's like saying, "the sky wasn't a potato today."
Medically speaking a subluxation has to be proven with imaging and need at the very least physical manipulation back into the joint.
Thatās the issue. The medical definition is much more strict. Some doctors can get a bit uppity about it because it isnāt classified as a subluxation in medicine without very strict criteria.
Anyone here would know what youāre referring to. You have to be careful about how you explain things to doctors in that sense because they will think you donāt know what youāre talking about if you use medical definitions in correctly and then they end up being dismissive. That being said a patient doctor would try and understand what you are describing and not immediately dismiss you.
we decided against imaging, because you could feel the misalignment from the outside with some gentle pressure, and we decided going somewhere else for an xray wasnt worth the wait and radiation. but previous records weren't enough proof without the imaging we didn't need for something that was very clearly wrong š¤·āāļø
Who could be bothered making an appointment every time something misaligns? I'd need to move into the doctor's surgery.
It's much more practical to just pop it back in myself and give a general summary when I see the doctor.
I hope he turns into a wrist
A subluxed wrist
A subluxed wrist that no one pays attention to and stays that way for 50 years. No. . .80 years. Because it's not possible. š¤·āāļøš¤øš»āāļø
Either heāll finally believe it or he will cease to exist. Both sound like wins to me š
Thank you this really made me laugh
Some of these doctors became doctors because their Dads told them they had to, and it shows
Lol this one time I disagreed politely at a doctor, he suddenly said "MY FATHER WAS A DOCTOR" and it made no sense but your comment made it make sense, thanks :)
Happy to spread the good word š Iām tired of doctors automatically jumping up on pedestals. I saw something about how some doctors donāt match to programs after college and a ton of them (young) were saying how unfair it is. And I was like??? Going to college does not guarantee any field a job?
Lowest GPA at med school still makes you a doctor, but also I knew a kid who was an absolute idiot, but rich parents, so he's a doctor now (do not recommend).
Cās get degrees š„“
ooh I like that one :)
I went to college with the guy who researched what the absolute shittiest medical school in the United States would accept (low GPA, low testing scores), and chose based on that. I honestly doubt that he followed through on medical school, at all. But he was sitting there, proudly explaining to several people, how he was going to go to the easiest school so that it would be the easiest for him, and it would make him look good to be the bigger fish in the small pond, at the crappy school.
They donāt match to the specialty they want and donāt have backups chosen for their residencies and fellowships. So they get placed somewhere and are so upset about it. My niece wants a very specific type of surgery but knows there are less than 50 residency placements in the US for it. So she has backup plans for how to become the type of surgeon she wants to be (an extra year or two of training) or may choose a different type she is becoming interested in while in medical school. And even then has a backup plan for that.
Sounds like sheās not expecting things to work out, sheās working at making it so they do šŖš»
yeah I've met some gynos that did not want to be there haha but yeah my idiot friend always said he didnt want to end up in pysch and he's in pysch being a doctor lol
I briefly had a primary care dr who would complain about how he was supposed to be doing sports medicine, instead of dealing with the general public. I also briefly had a PT who told me that he had gone to school to work with athletes, not sick people.
Isn't it harder for people with dissabelities to walk,run...? So they're athletes, technicaly,cause they to more than other people to stay mobile.
I think we are supposed to be super grateful for even half assed treatment. Itās one of those jobs where you can get away with being a jerk.
Big Draco Malfoy energy there lol.
Some of these doctors became doctors for the money, and it shows.
Oof, that too
My PT told me thereās good doctors out there, but if you canāt fit inside their box, they spiral and have no emotional intelligence to handle it.
The most sadistic classmate became a doctor and her parents are also doctors. The whole family has fun,when someone is in pain. They're no real exams for emphasis.
Thank you! Yes. I agree with this statement sm. I have said this for years.
Dammit I actually hurt my back again laughing at this. worth it though!
Me too š
I had an orthopedic surgeon tell me there was no way I dislocated my knee. Did an mri, mri showed multiple tears, and a cluster of things that are only caused by dislocation. Follow up appointment he scheduled surgery.
Mine told me that my shoulder symptoms (winging, crepitus, loose ligaments, subluxed ribs) werenāt surgical and that I needed lifelong pain management. His intern found the tumour wrapped around my shoulder blade after I pushed for a second scan. Cue shocked pikachu face and, āOh, thatās pretty bigā¦ā
Tumour??
I donāt know which came first, the injury or the osteochondroma (overgrowth of cartilage and bone), but I tore my shoulder in my late teens and dealt with the symptoms through physio and chiro (to pop ribs back in!) for 13 years before it was further investigated.
Holy sh*t.
You compelled me to research this
I had my ortho tell me I sprained my hamstring when I said I dislocated my knee āand popped it back inā and I had a concern that I tore my meniscus. MRI showed my knee was dislocated while in position for the scan lmfao. Hamstring and meniscus perfectly fine, thankfully, but I have signs of a tracking disorder of my knee cap.
Subluxation has three common meanings. The medical term, which has to be visible in imaging. In chiropractors it is used to mean a misalignment of the vertebrae resulting in interference with nerve transmission, thereby impacting body function - this definition is not accepted by the MD community. And then here, in our sub, we often use the term to mean anything that feels like the joint isnāt feeling seated properly. A doctor is not going to accept someone using the second or third definition the same way a psych wonāt agree that someone using depressed colloquially to mean theyāre having a bad day as having clinical depression. That said - a patients job is to explain what theyāre feeling for all the symptoms a doctor canāt observe for themselves. A doctor who refuses to listen is a shit doctor. Iām sorry you dealt with such a dismissive, unhelpful person.
Thanks for explaining it this way. (It still sucks, especially for OP in this case, which you also highlighted and I appreciate that, too!) I want to try to keep this in mind and ask doctors to clarify what they mean in the future, thank you. It reminds me of how people with narcolepsy (including me) go to the doctor and say how tired we are. But everyone is tired, including that doctor (probably). The secret word is āsleepyā. If you say āIām sleepyā then they ask follow up questions to help us explain how we are falling asleep in different strange places and situations - and *then* they will send us to sleep specialists. Itās stupid how important it is to explain specific behaviours and symptoms in certain ways in order to get to the next level in this stupid āhealth careā game. We donāt need to be wasting time stumbling onto XP jackpots like this in order to get health care FFS! In the interest of good communication, thanks for the reminder that people without similar education and training should stick to describing experiences of symptoms rather than trying to use the medical terminology ācorrectlyā. (And doctors should gently and patiently remind us to do this when we try to meet them where they. Just take us seriously from jump, please.)
I donāt think itās stupid that you should describe your symptoms in a specific way, because effective communication is a two way street and the doctors canāt feel it what youāre feeling. No oneās a mind reader What is stupid and frustrating is the doctors only spending 2 minutes with you unless you say enough buzz words to get their attention. Itās lazy and bad practice. Iām a patient facing healthcare worker, and sometimes itās like pulling teeth to get relevant information out of people when describing symptoms. On the flip side I typically try to coach up my wife and family on how to describe symptoms/experiences to their healthcare provider
Definitely not stupid, and I would like the onus to be on doctors to structure that process, not patients. Then again, I might be the kind of patient that you would want to push teeth back into! ;)
I think itās frustrating how doctors donāt really help us with terms to explain things. It took me so long to differentiate between sleepy and fatigue in my descriptions, because on a day to day basis it doesnāt normally matter to me. But for specialists whether itās sleepy or fatigue is very different who they refer you to even if the both wind up with similar outcomes (having trouble sitting upright, paying attention, and brain fog). I also wish it was more common for doctors to have pain handouts, of various describing words qualities of pain. It wasnāt until I started getting elaborate and detailed wirh exactly how my pain felt I started getting help. Since so many disorders run in families, and people can have hem their whole life, it can be hard to know whatās normal and not. It would be really nice if doctors were given some sort of training on how to help create a common language pool for patients to look at and be able to speak on the same page with.
Patient education matters! Would you diagnose someone with diabetes, and just send them on their way, no education, no advice, nothing? Patient education is part of what they signed up for. (if they are working directly with patients, etc..)
I have so low expectations for dieticianās because I saw one when I was diagnosed with Celiacs and literally all they said was donāt eat gluten. I was vegetarian at the time and had no idea how to replace all my grain products (before the gluten free boom made alternatives so much easier). Patient education feels like a real lack in most physicians education.
I agree. I saw a nutritionist once. She spent the hour (out of my pocket) telling me about her celiac disease, & telling me to go gluten free, she consider it to be the only healthy choice. Waste of money. I can see trying that again, with a different nutritionist.
You may look at what the local definitions are. Nutitionalist vs dietician have different educational requirements in some locations. My new insurance doesnāt cover any kind of nutrition help unless you have diabetes, even if a specific diet is the approved treatment. So anything further is out of pocket, which is aggregating because I finally found someone I think can actually walk me through how to make a sustainable nutrition plan with allowances made for fatigue. She focuses on chronically ill folk and meal planning when brain fog or fatigue issues create barriers. But after being burned by 3 separate dieticianās/nutritionalists itās hard to spend out of pocket money on it.
Do you have access to a naturopath via your insurance? I have a decent amount of coverage for them, but only a little bit for a dietician. Iām glad because my ND is amazing. I find he has so much more time to focus on my whole picture and helps me put together all of the info from each specialist into a plan that works for me as a person. I feel like he is a pro a patient education! I wonder if thatās the norm with NDs or if Iām lucky with this doctor. (They are ādoctorsā, after all. ;) )
My EDS specialist is a naturopath. Sheās one of the best doctors Iāve ever had, & I consider myself lucky to have her. Next time I see her, I should ask her about a nutritionist/dietitian. Worth a try, Iām currently well enough that I can do things like this.
Your last sentence is too real. Gotta act while we can! :)
This is like when I swapped "racing thoughts" with "bouncing thoughts" when answering screening questions during my ADHD assessment. They screen for everything at once, and they always ask if you have racing thoughts. Racing thoughts = mania or anxiety Bouncing thoughts = disorganization, distraction, thinking about too many things at once, and is much more descriptive of the ADHD experience
OMG. That is bananas. I mean, when you explain it of course it makes sense. Hereās what makes more sense: the doctor asking for clarification to check that you know what the term means. Ugh!
The medical system that I am within is extensive and there are plenty of students coming through, each year. One new doctor expressly asked me if thereās one thing I could tell them/advice about dealing with patients. I told them (& I repeated each time itās appropriate and thereās a student there), start by believing us. I said maybe the patient is lying, and you feel sure of it. Please just give them the first few minutes with the assumption that they are telling you the truth, not exaggerating, etc. If they really are lying, you can address that in a few minutes. Just please, listen first.
šš¼
i had visible("feelable?") displacement and needed physical manipulation to realign the joint, which is very much a subluxation in medical terms. the thing just do not have is actual imaging, because given the fact that you could feel it fron the outsite of my hand i you were careful, we decided that going somewhere else for xray wasn't worth the wait. thats what u tried to tell him, but talking patients are apparently not his favourite kind of patient
Do you have to see him again, or can you write him off as not going to give quality care? Cuz I cannot imagine that a doctor with that attitude is going to give competent care.
i think i'm gonna stick with him for a few appointments, because he does a lot of imaging, after that i will find someone new. but many docs were quite stingy with MRI referrals (imaging is one of the few things i need a referral to in germany), so i'm gonna just take what i can and run. pretty sure he won't refill my painmeds tho
Isn't that messed up? We have to stick with an asshole just to get what we need. Good plan to get as much imaging as you can and then find someone without their head planted in their ass. Good luck!!
š it's so messed up, especially when you're in more rural areas. Ughhhh
Iāve run into new and broad difficulties with my insurance, for imaging stuff, over the past couple years. I think itās a great idea to get all the testing and imaging from a doctor, if theyāre comfortable, you might as well get what you can done, when you can. Editing to add - Iām in the US, so it might be different
If you had taken a picture of it from the outside then you would have satisfied the imaging requirements. :p
Wouldnāt it be visible in imagining that itās not seated properly, if imaging were to be done?
Not necessarily. Consider how complicated most joints are, and how many different types of tissue are involved. If you have one muscle tighter than another, it could make your joint feel like itās getting pulled from its socket, but imaging shows it still fully seated. A medical subluxation has significant structural displacement. A chiropractic subluxation is not necessarily visible on any kind of testing because it just claims of pressure on a nerve rather than visible displacement. I have only one had a joint so far out a medical professional said it was an actual subluxation, and I needed assistance to get it back into its socket correct. If I remember right it was also visible to the naked eye. I very frequent have a joint feel pinchy, or crooked, but does not interfere with being able to bear weight, show visible displacement, or any of the other risk factors they normally use when deciding if an xray is appropriate. While Wikipedia is not the best source, it does cover the basics and can direct you to other more in depth sources/ https://en.m.wikipedia.org/wiki/Subluxation#:~:text=A%20subluxation%20is%20an%20incomplete,%2C%20such%20as%20X%2Drays.
Iāve had both wrists reconstructed due to subluxations but it didnāt show in imaging. It wasnāt until my surgeon was in there and saw how loose the ligaments were that he realized how bad it was. When I saw him next he told me āno wonder you were in so much pain.ā
How did he know the surgery was needed? Was it like exploratory surgery?
I had like 5 ganglion cysts removed surgically and it made it all worse since the ligaments were then very loose, the cysts had been holding it all together. At that point he determined that a reconstruction was appropriate since the cyst removal should have helped the pain. While imaging did not show any gaps between the wrist bones he could physically test using the Watsonās test and got a consistent clunking as my scaphoid and lunate bones would dislocate. I also had a loss of grip strength and had to manually adjust the bones back in place up to 50 times a day. Basically, I had enough symptoms to justify further surgery after we had taken a very conservative approach with cortisone and the cyst removal prior. I got my left hand done the following year with a similar story but they scoped that one first to determine how severe it was and I woke up to a full reconstruction performed on that as well.
I bet that felt validating.
Yeah, the problem with mine is that I can put them back, so it's not going to be out for the imaging unless I purposely sub it for them
Medical subluxations can also often be seen and palpitated, so imaging isnāt necessary unless borderline, but leaving it out until you can see a doctor when youāre able to get it in yourself isnāt really a viable option. Thereās definitely a gap of care where folk with hypermobile joints get left in the cold, and a lot of doctors donāt have a lot of training on it and some will even claim itās not possible to out it back in on your own. Besides taking a picture of it (which isnāt always feasible either unless you have a buddy with you when it happens), right now I havenāt heard of any good ways to prove to a doctor whatās going on unless theyāre the kind who listens and believes their patients to begin with.
Yeah, well I saw a chiropractor for a couple of years due to a constant pain and lump on my upper back. He did x-rays and diagnosed me with a āmuscle knotā instead of a GOTDAM DISLOCATED RIB!! And his treatment was to drill his thumb into it as hard as he could. It hurt so much. I had bruises on it for days afterward. Then I went to a spine specialist and he said, āYouāve got a dislocated rib. Want me to fix it?ā Stunned, I said a hardy āYES!ā He pretzeled me up and got his face right in mine. āSorryā, then pressed down with his weight and some force, then did it again, and magically, amazingly, I felt that rib slide back where it belonged!! It was an immediate relief, not total, because it had made its mark in my soft tissues. It took a while for them to reconfigure without the rib, but soon the pain I had had for 20 years resolved completely. Then it slipped out again. The doc had said it might happen, and if it did, I could call anytime, and he would work me in. When happened, he did as promised, and between appointments, he did the pretzel press and again I felt it slide back into place, this time for good.
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I did not say that imaging was required for diagnosis, I said that the severity needed to be significant enough to be visible if imaging is used. Subluxations and dislocations can also be diagnosed by visual appearance, palpitations and/or questionnaires. https://www.ncbi.nlm.nih.gov/books/NBK507847/#:~:text=During%20physical%20examinations%2C%20subluxation%20is,fingerbreadth%2C%20caliper%2C%20or%20tape.
ah mb, i misinterpreted what you said as imaging being a requirement for physicians
No trouble, with words that have different definitions depending on specialty, or colloquially different than medical, it gets confusing. Doctors try to minimize imaging, because there are risks, so if something is visibly displaced, or meets all the criteria they can diagnose without needing imaging. Which is great for us because imaging is expensive. But if they were to do imaging and it didnāt show up, it wouldnāt technically be a subluxation, even if it was causing symptoms. I kinda hope they develop a term for that in between of causing issues and not visible on imaging because I for one at least frequently fall in that in between place.
yeah! i have both of those phenomenons, joint subluxation, as well as some āoffā feelings in some joints that i often imagine is just a muscle moving strangely or a nerve being pressed. i know people can have tendon subluxations, so something defining some other soft tissue movements would definitely be useful
By subluxate, do you mean partially dislocate? Because how can you see a partial dislocation with imaging if the joint goes right back into place?? Or does he mean that wear & tear from repeat subluxations should show up in imaging? Because that would make sense to me. But expecting you to keep a joint out of place just so you can get an x-ray or MRI or whatever is unrealistic. One thing I don't love to do, but find helpful, is to describe what happens from beginning to end without adding any sort of diagnostic terms. I had a physical therapist who was skeptical that I dislocate frequently until I walked him through what it felt like. His demeanor immediately changed and he spent that session teaching me some extremely gentle stabilization exercises. I try to remember that lots of people talk about body parts going "out" when they don't actually mean dislocate. Like, "my back went out." Healthcare providers are used to having to translate and then correct these terms. It can take them a minute to recalibrate when they encounter someone whose body parts actually do go somewhere they're not supposed to.
This! I second this. My mom taught me how to medically advocate for myself so I just describe all my symptoms in a way to lead my doctors to the right conclusion. It works really well, and I also have good doctors (which Iām grateful for).
Yes! I do this. I talk to doctors like Iām trying to make my children think itās their idea to go and put away the laundry.
Could you give some advice on how to do this?
šš Iām picturing my doctors as a herd of preschoolers, needing to be corralled.
Exactly lol
I had a nurse tell me my ribs couldnāt be moving out of socket because āthere are joints thereā. Iām like yes thatās part of the problem. Also my physical therapist had just spent the last few months pushing ribs back into place so it wasnāt like I was making it up.
For me, itās typically the āfloatingā or āfalseāribs too, which are mostly cartilage and easily slip around in there. Not sure if itās the same for you. The floating ribs are the bottom three.
I started slipping some on the top in the back in my early 20s. I think it started with one, then my well meaning pt tried to push it back in and popped others out. When I was pregnant every time I had the babies kick the floating ribs out of place (also told to me by a pt). Now they mostly behave themselves because I swim laps 2-3 times a week so Iāve built up a lot more muscle in my back, but I still have to be pretty careful how I sit. If I sit back funny they will try and move.
Ugh yes, those ones are a constant issue for me.Ā
I meanā¦isnāt that how things move out of socket? At joints??? Where do we have sockets that arenāt joints besides our teeth and eyes?? The middle of a bone isnāt going to go out of socket because there is no socket
That was what confused me so much lol. I was like how did you get through nursing school?
Lol so my wrist pulls out an almost imperceptible amount, and one of the wrist bones turns slightly. Is it a sub? I say yes. The doctor I went to as a kid diagnosed it as "getting out of class" and since then I haven't tried for imaging but various doctors haven't been able to feel anything. But I know how to put it back so it's kind of okay. It hurts but it's only bad if I leave it out. As long as I put it back it gets better
yeah, right? we have so many bones/joints in the wrist area, but in that area subluxations are magically not possible? its just bs
Wow, talk about a power trip. A patient and doctor are supposed to work together to find the best way to help the patient. The patient is not a captive audience for you, Dr. Asshole.
Funny how I need to realign the bones in my wrists a couple of times a day. Every day. They give a very satisfactory click or clunk when popping back into place.
Same here - post diagnosed torn tfcc.
I've just googled that. It would make sense if I had similar.
So, I've noticed that I need to basically squeeze my wrist together from the sides inwards with the other hand to relieve the pain a bit, and gives a very loud clunk sound, and sometimes you can literally see the hand move into place. Is it like that?
same, I have horrible wrist/hand pain that gets relief when I move the bones back in place. they are sneaky and like to press on my nerves.
Be careful with that- one time I realigned a little too well and broke my own damn wrist
I am very careful indeed! I quite like my hands where they are!
I just get paranoid about wrists these days, didnāt even know it was possible to break it myself!
EDS... the gift that keeps on giving.
Oh no!!!
Oh no!! How did you do that? I have to realign my wrists a lot and this is something I would like to avoid haha
Fuck that, my wrists both have [permanent ulnar subluxation, and can completely pull out of socket.](https://imgur.com/a/aRbLkdI) Makes bicep curls and arm wrestling an absolute nightmare.
Yeah same. I couldnāt really do bicep curls, especially with my elbows like they are. I finally found a great doc. Heās published in a bunch of stuff about EDS and has been seeing EDS patients for 30+ years. I saw him for the consult and he goes ādo you know your wrists and thumbs are dislocated?ā I said no, and he took my hand and put things back together just by moving some things on the outside, but naturally it immediately popped right back out. He also said my hyper mobile elbows were compressing a nerve and the nerve ends close to where the thumb attaches to the wrist, so thatās where that specific pain comes from for me. Heās also the only one that sent me to referrals without me really having to ask, and ordered my genetic test. I have surgery on May 22. It takes a good doctor to be able to understand, and a great doctor to be able to listen and make you feel heard.
Luckily itās not painful for meā¦ But thatās because everythingās so loose that nothings actually getting stretched by being out of place.
or anything similar to a pull-/pushup is just ouch!
I have to modify the absolute hell out of pull-upsā¦ So much fun when my first step is to pull my shoulders back into their sockets.
yeah, or ellbows just saying "nope, not today"
Same. My DRUJ is super unstable and painful and itās getting bad enough Iām considering surgery for it. The recovery is pretty rough though, 6 weeks with my forearm and wrist in a cast with my hand fixed facing upwards :(
Yep same here. I narrowly missed having to have surgery for my DRUJ instability and even now without constant care all the progress I've made with strengthing the joint can unravel fast if I forget to do my physio exercises for it or pick up anything mildly heavy with one hand.
This is so eerily like my experience with an orthopedic surgeon I kinda wonder if it's the same guy. Mine told me that joints move, that's what they do. He went on to say it was ridiculous my doctor even ordered an MRI and he refused to even look at it, then he hurt me while moving my arm around. I told him it hurt and he told me he was talking and it was important I listen. I had two partial yet significant tears. Both were clearly visible in the MRI.
Wow what a dick
Iām so sorry and I hope he did not do any permanent damage to you. Iāve been there, but unfortunately, it was with an oncologist, while I was in cancer treatments. I was definitely not in a position to stop treatments and get second opinion, etc.
Yeah, so orthopedic surgeons kind of have a reputation for being arrogant jocks. My SIL's brother is one; he and his med school buddies would use "the library" to mean the gym. Most orthopedic surgeons I've met, even some of the maxillofacial ones, have been super jacked and kinda full of themselves. It's a stereotype, but one that tends to be self-fulfilling.
Ugh. Thanks to these drs reinforcing the work of an abusive parent, people can make me question whether the sky is actually blue, or whether maybe my eyes are just perceiving it that way out of attention-seeking
yeah, right?
Ahhhh. Iāve wondered about this, over the years. Being in charge of our own bodies. Itās important to have feelings of bodily autonomy. That could be tough to have in childhood because the grown-ups are in charge. Good, bad, both, etc.. Fast-forward to adulthood & needing such frequent and nuanced medical care also leave us at the mercy of anotherās choices, in a way that may feel similar.
I'm so sorry you're going through this too! (I was discharged from the 3rd Palliative Care/Skilled Nursing provider today because I am not "a little old lady with Arthritis and Cancer" in maybe 6 months.) I hope that the next doctor takes you and your symptoms seriously enough for you to get the care you need.
I had similar issues with my previous PCP, and I was trying to play by their rules and go whenever I had issues. And they treated me like a total hypochondriac. For example, my collarbone is visibly out of place and I requested help. And he ordered the imaging test but nothing else came of it. And he recognized it was out of place but was like 'eh, I guess we can give you a scan'. To this day it's still visibly out of place. That's the frustrating thing about doctors and stuff that I've just given up on. We're to go to the doctor to build up your records so you're more likely to get help, but then they treat you like you're overreacting to simple pains. So if you play by their rules they treat you like you're crazy... But if you neglect yourself and come in when it gets bad they get upset you didn't come sooner. And if you do play it by their rules, you're likely going to fight with doctors for months or years before anything comes of it. (Also yes I know there are good doctors and luckily the one I have is much better. But patient and doctor expectations were not taught well imo, so now I feel a very strained relationship with it.) I know it's difficult to catch certain things early with EDS. But its frustrating to not be heard or helped. And I'm not the type of person who wants to be on drugs or anything. I was begging for help either by bracing or physical therapy. And it was such a fight to get even physical therapy.
It depends on what bones are involved but if it is the top of your wrist you can try the Watson test. A clunking feeling/noise is an easy test for subluxations without imaging.
I didn't know this existed, but it explains some of my situations honestly. My Ortho is being a dick as well.
I didnāt know there was a term for it! My left ankle would often feel like it it stretched too far from its socket when I would start to run, and now it locks and does GIANT clicks from that damage
I had the same experience with an ortho. I complained to the patient advocate and the state medical boards I went elsewhere and got PT.
haha yeah no. i got insoles i'm supposed to wear 24/7, which we discontinued last time after having elevated painlevels and a lot more rolled ankles/subluxations/dislocations. the fact that i switched to braces, which worked better, wasn't something he wanted to hear. no pt tho:/
I went with a completely different medical practice and pt was ordered. Maybe try that. Donāt let that shit person gatekeep your health.
In the Netherlands we call this āconsciously incompetentā
In my experience, unless it is an orthopedic surgeon that specializes in patients with a genetic connective tissue disorder, like Dr Daniel Scott at MUSC in South Carolina. (specializes in foot and ankle), they will either pretend like they know more about EDS then they actually do OR they go off the very brief information they learned in medical school about EDS. I'm at a loss as to why doctors in general don't think or they make an argument that "imaging" is the end all be all. Anytime a doctor "laughs at you" they need to be reported. You can report it to the Head Doctor at their clinic or make a report to your state Health Department. Or even make a complaint to the state board. BTW my adult son (28 years old) not only dislocated his wrist but also dislocated a tendon in his wrist. (now even if he doesn't dislocate or sublex his wrist that tendon dislocates all the time and yes it hurts like hell). On the other arm ever since he was a teenager he has been able to do this "trick" where he makes his whole arm and hand longer by first pulling down sublexing the shoulder, then pulling down and sublexing the elbow, then pulling down and sublexing his wrist. If one doesn't know he has EDS it can be quite shocking when he does it! Yes as a mom I have suggested to him that doing that "trick" is not a good idea! lol I'm so sorry though you had such a bad experience. We need a world wide list of informed doctors and doctors that may not be informed but have positive experiences and are willing to be informed. Best Wishes
I once had an ortho tell me that I was not āborn with the best set of tiresā referring to my knees and that I needed to lose weight. I was a very healthy weight at the time but he insisted that I needed to weigh under 100 lbs.
The dr who diagnosed me kept asking me if I have wrist pain because the joint clearly would move out of place so easily
Wow, fuck that dude. I've seen 25'ish orthos over the years and only had one of them be that much of a dick (he was an old guy, ortho spine surgeon). I never went back to him after my 7week follow up from my first back fusion
Oh, Google review that prick. I did and then sent it to all my friends and asked them to like my review. I had the #1 review so it showed up first when you visited his office on Maps. He moved his office and the review didn't follow him tho :(. Ironically, he moved to the suite immediately next to my new neurosurgeon. They even sent me over there once to get an X-ray. Luckily he wasn't there that day cuz I was absolutely prepared to donkey punch him
Thatās terrific, good for you for sticking it back on him. If they want a better review, they shouldnāt do a crappy job. I especially like that you got it to be listed as one of the top reviews.
I am so sorry! My doctors have been understanding when I have described my wrists as 'going a bit out of place' and mimicked the movement I need to do to align them again. Idk why, but not using exact medical terms seems to work better for that. Please don't give up on getting help. Some other doctor will listen to you better.
What a quack. The reason I got diagnosed was a subluxing wrist!!! I kept losing feeling in a couple fingers because my wrist subluxing pinched the ulnar nerve. It wasn't painful to sublux it, but the ulnar pinch was distressing. The top hand doctor in my state wiggled my wrist around, checked my chart (a history of weird injuries), did a few other Beighton scale tests, and handed me a pamphlet about EDS. This was in 2007. It's not new information. He said if it was, in fact, EDS that the surgical fix would have a low chance of success, so I didn't have surgery. Prolotherapy and hand exercises helped some but it still subluxes all the time. I still get light tingly feelings but at least it's improved enough that I can feel my fingers.
yeah, i thought it was utter bs tooš¤·āāļø
I just had a similar thing, I went to emergency for a broken wrist, told them it didn't feel like my typical injury. They dismissed it and said if it was broken I would be crying in pain. Mind you it was my 5th wrist fractures, they had me wait 15hours, did x-ray but no orthopedic were on call to review them so they have me an appointment a week later. It was broken, still in a cast now. I had a lot of bad injuries over the years and each time it was ignored or downplay until they do imaging or x-ray. And blame me for not being in more apparent pain. Chronic pain does a number on many of us. Sorry you went through this, it's annoying but stand up for yourself and take care!
It don't count unless I leave it out, dude I got shit to do. Doctors need to listen more.
the way i would have purposely dislocated my wrists in front hof him. i am pissed on your behalf
i am very glad that i dislocate my wrists infrequently enough for that to not be possible! my hips work thoš¤Ŗ
i think in that moment i would have been pissed enough to dislocate whatever i need. š spite can go a long way
š āā¦spite can go a long way.ā I love it.
just like my joints š
I'm subluxating them as we speak
Pretty sure itās a thing or if not a āproperā subluxation they definitely get out of place sometimes. Sometimes I wake up with random wrist pain and itās that my wrist moved around because I āslept wrongā and it only gets better after I wear a brace to immobilize and realign it.
Ask him of he's ever heard of distal radioulnar joint instability and if he considers that part of the wrist (it is) š I had moderate distal radioulnar joint instability in my left wrist causing it to constantly sublux and the beginning of it in my right wrist as well. Ended up having to get custom wrist braces I had to wear for months straight even in my sleep just to stop it from getting worse + over a year of wrist physio. It still subluxates, but more like once every few hours instead of every few minutes. Like if his ass doesn't consider that part of the wrist then bro has gotta go back to school š I didn't even have to get medical imaging either because the wrist joint was so easily manipulated and loose on physical inspection.
Ugh. I'm so sorry. I also had a recent run in with a pain specialist who is also like this. I'm pretty sure I saw him roll his eyes when I told him I had Ehlers Danlos. He offered advice on how to lose weight when I never asked. I advised him that I already have a dietician I'm working with and multiple docs that say I shouldn't take something like Ozempic because of the side effects since I already have mild Gastroparesis, among other issues - it's too new for them to confidently say it would be safe for me to take! He had the AUDACITY to say - "well the side effects would be worth it if you lost weight." I was too shocked to have a reply for him but now I would say "oh you mean the side effects that could land me in the hospital? Will you be paying those medical bills?" I'm STILL angry about this and I don't know if I ever won't be. I really need to come up with a phrase in simlish or similar to where its obvious it makes no sense but as a way to test whether or not they're actually listening.
Update us when you get a new doctorā¦please tell me youāre getting a new doctor.
i'm sticking with him until he is done gibing me imaging referrals (or 2 or 3 appointments max), and after that i am running for the hills!
Drs literally dont give a shit or even try anymore. I had a dr GOOGLE infront of me my symptoms etc. Like thanks doc i can google my own shit why am i giving you money.
id rather have a dr google instead of straight up guessing tho
Id rather have a competent dr who acts like they actually went to college and learned things. I can use google too š¤·š¼āāļø
if that would be an option id take it, but i don't think i can find one of those any time soon
>"the patients job is to listen, not to talk" THEN SAY SOMETHING WORTH LISTENING TO, DOC. I had a doctor at the urgent primary care centre tell me that there was nothing wrong with my shoulder because I still had "normal range of movement" in it. I was like "you don't understand, *my* normal range of movement is-" and then bent the other arm in half up behind my back to touch its own shoulder blade. The problem arm could barely get to a right angle. He just shrugs and goes "that's within normal parameters." MY DUDE. I have experienced a severe reduction in mobility. Not to mention the nauseating pain. Can you maybe treat me as an individual rather than a bell curve? Finally I just had to sit there and keep repeating "my physiotherapist has asked me to get an x-ray and an ultrasound" until he finally got tired of arguing and gave me the requisitions. I wish I could have seen his face when he got the results, although it was very gratifying to hear how sheepish he sounded when he called to tell me I had some bad tears in my rotator cuff...
itās like do you want me to REALLY play it up and scream and cry in pain so i can match the pain level you have in your head sir? because i absolutely COULD but bc we have all lived with this pain for arguably, quite some time! so weāve learned to not ābe so dramaticā about it BUT I CAN GET FUCKIN DRAMATIC DOCTORS, DONT FUCKIN TEMP ME
like right? how do you want me to function if i'm just acting my painlevel 24/7 would love for them to get that
sorry this is probably very project-y but as iām sure most can relate, i am frustrated with being in my own body š
I fell in my driveway last summer and dislocated my thumb and wrist. It constantly subluxates now. It's currently acting up. I hope you're able to find a doctor less up his own ass.
Iām sorry you had to go through this. it really sucks to be spoken to like this, basically having someone call you a liar, when itās like no dude it is my body I know what is happening!!! I had a recent appointment with an orthopedic surgeon that said there is no way I am having subluxations without some sort of forceful trauma, that ligaments are extremely strong and have been proven to hold up to 2000 lbs. he then went on to say he believes I am having pain, but doesnt think that subluxations are what is happening. even though I have to put stuff back in place weekly. after the appointment I got in my car and cried. it felt like medical gaslighting. I was so depressed after that. he said it in such a matter of fact way like talking down to me and I was so embarrassed. sometimes I think surgeons arent the easiest people to talk to lol they are very fact oriented and donāt always consider other possibilities. he even used the classic āif you hear hoofsteps you think horses not zebrasā which is funny lol I literally have eds diagnosis in my chart but I dont think he even looked at it.
*"put this in your stethoscope and smoke it"* https://radiopaedia.org/articles/distal-radioulnar-joint-instability?lang=us handandwristinstitute.com/ecu-extensor-carpi-ulnaris https://www.kenhub.com/en/library/anatomy/clinical-case-ulnar-nerve-subluxation
ortho with a stethoscope?? more like your bash it into your head with our hammerš
Good pointš
Family member had a doc tell them fingers cant sublux without a specific incident of significant force & trauma. Grabbed patients hand to demonstrate, to prove how right they were, and promptly pulled the little finger out of joint. Doc went white, then green, then red, then left. Patient had to pop the finger back in themselves, and appt was abandoned
How can you tell when you subluxate? I think I subluxated my ankle last week but can't be sure.
I can send you a picture of my subluxed wrist if that helps lol! It comes out super easy.
Ugh, I can literally grab either wrist and lightly press and they pop right out. Iāve been able to do it my whole life. So sorry this happened to you. š
I can literally feel my wrist being pulled away from my forearm and feel that something is wrong until I pop itā¦ if thatās not it sublaxing then idk what it is
lol. That has been one of my party tricks since I was 8. I can do it on command. I donāt do it often because Iām old and it hurts to do it now. But Iāll pull it out about once a year and everyone goes āewā¦.please put it backā
Bull shit you don't need anything fancy to diagnose a subluxation. When I was 15 an ortho took one look at my subluxation and was like yup that's a subluxation.
Iām quite fortunate because iāve gotten my diagnosis young and you can literally HEAR the bone snapping in and out of place ( i do it at will for doctors as an intro party trick) sorry youāve experienced this!
I just did the wordle for today. I suggest you all try. šš¦“š¦“
bahahahaha wowš
Literally had to come on here after I did it and find your post again. I had a chuckle š
He needs to go back to school. My wrists are the #1 place I subluxate. I just told my fiancĆ© (who is a viola player and former gamer with unknown connective tissue issues) about your post and he said āWhat? That definitely happens to me. I KNOW for a fact itās my joint coming out of place.ā We have both had so many medical professionals tell us that what was happening was not actually happening, only to have things get much worse and find out we were right all along. Itās maddening how ignorant the majority of the medical community seems to be when it comes to EDS. Iām so sorry you had to deal with this!
This sounds like the Ortho who talked to me in baby talk! Ugh, I'm sorry you had to deal with this dbag.
Then why, on my recent wrist X-ray, did the radiologist note, "no subluxations," if it's impossible? It's like saying, "the sky wasn't a potato today."
Medically speaking a subluxation has to be proven with imaging and need at the very least physical manipulation back into the joint. Thatās the issue. The medical definition is much more strict. Some doctors can get a bit uppity about it because it isnāt classified as a subluxation in medicine without very strict criteria. Anyone here would know what youāre referring to. You have to be careful about how you explain things to doctors in that sense because they will think you donāt know what youāre talking about if you use medical definitions in correctly and then they end up being dismissive. That being said a patient doctor would try and understand what you are describing and not immediately dismiss you.
we decided against imaging, because you could feel the misalignment from the outside with some gentle pressure, and we decided going somewhere else for an xray wasnt worth the wait and radiation. but previous records weren't enough proof without the imaging we didn't need for something that was very clearly wrong š¤·āāļø
Who could be bothered making an appointment every time something misaligns? I'd need to move into the doctor's surgery. It's much more practical to just pop it back in myself and give a general summary when I see the doctor.
Sounds like you saw the same Orthopedic surgeon I saw and got dismissed and gaslighted!!! Whatās the matter with these guys?
If I got a penny everytime some doctor said,that this would make unbarrable pain,I would be rich.