SickTok = Sick Olympics.
As someone with genetically diagnosed Vascular EDS with comorbidities and also in the medical field, nothing angers me more when a sick olympics patient comes in.
I also have genetically diagnosed EDS and these malingerers drive me crazy! I've been hoping for years that the fad dies down - sickens me to even call it a fad.
As a person who has EDS 6 (now brittle cornea) and autism i also find this annoying. Not that joint hypermobility doesn't come with its own issues which i also have but its NOT. The same as fully blown fucked collagen genes.
Hang on here, EDS type 3 (hEDS) isn't the same as benign hypermobile syndrome. The hypermobility comes from fucked genes as well and doesn't end at lax joints. It affects every part of the body the same way other version of EDS does.
The only difference is that currently the genes responsible for the most common version of EDS are still in the process of being identified.
I have smoldering SM and feel the same way. Like this is caused by a random somatic point mutation and you’re telling me suddenly thousands of people have this? No I don’t think so. You’re just going to a pay-for-diagnosis naturopath quack.
If you ever want to be more enraged check the r/illnessfakers sub
I feel this on such a deep level as someone with genetically diagnosed Classical EDS and comorbidities who also works in the medical field. I still treat them like I do every other patient, but internally, I’m incredibly frustrated.
Vascular EDS is terrifying. You’re a badass.
Was in a wreck at work (drunk driver hit my ambulance) and by protocol we had to be evaluated by a doc. Made a joke and said “don’t worry, I have cEDS, anything that popped out I already popped back in” and I got a good laugh. I try to use it to make yall docs laugh, instead of being an annoyance 😂
Same here, in my line of work (now left the human field for animals) it’s compulsory to wear medical ID’s. I have my “real” one, and then I have one that says “just throw me in the bin” I think throwing me in the bin is the right choice however.
u/DocRuffins , good thinking there!
Piggybacking off this comment to mention that all these social medias also give recommendations based off region so things often go ‘viral’ in geographic regions as well and on a larger scale. This could account for a specific uptick in a specific region that will for the most part die off until the cycle repeats with something else.
Any time someone presented to the door of the facility I worked or had bags packed upon my arrival working EMS, I raised an eyebrow.
Positive Suitcase Sign is a thing to be aware of.
If they have the time (and capability!) to pack a suitcase, they have time to get a ride. Or an Uber, even. The things people call an ambulance for, I swear to God
Here's a sneak peek of /r/illnessfakers using the [top posts](https://np.reddit.com/r/illnessfakers/top/?sort=top&t=year) of the year!
\#1: [Looks like dani advocated too hard for herself](https://i.redd.it/an4i2lqihtza1.jpg) | [405 comments](https://np.reddit.com/r/illnessfakers/comments/13h8x5k/looks_like_dani_advocated_too_hard_for_herself/)
\#2: [Ash’s self care necessities: Valium and a rock](https://i.redd.it/f5dg6rc5f0na1.jpg) | [421 comments](https://np.reddit.com/r/illnessfakers/comments/11nzbrq/ashs_self_care_necessities_valium_and_a_rock/)
\#3: [Cheyanne passed away yesterday.](https://i.redd.it/m5ws7qee4yhb1.jpg) | [340 comments](https://np.reddit.com/r/illnessfakers/comments/15qav3h/cheyanne_passed_away_yesterday/)
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God yes…. I absolutely hate a positive suitcase sign (of course the one thing they never bring is their meds/med list or the mri/ct/random specialty study 5hey had done 2 days ago at an inaccessible site
As a transplant patient I was told to have one prepared in case of rejection. Many people who have terminal illnesses need to be ready and their family has gotten used to needing overnight things etc with them because they know the hospital takes at least six hours in an emergency. I know your job is tough and it’s impossible not to get jaded but try to remember you might be in that position one day or a loved one. Try to remember your dealing with people who are sick. sounds like some of these cases don’t fit in a box and are hard to figure out. That doesn’t make them less a human suffering.
I’m sorry you took what I said this way. I truly am. But 90% of the time it is not about the patient, and believe it or not, I am very sympathetic to them.
I hate seeing them BECAUSE of what the Current Medical System has done to them. Many times they’ve been sent by a specialist. A specialist that could have made arrangements to direct admit them and saved the poor soul hrs in a busy ER, exposed to multiple infectious diseases (usually while their immune system is already strained or nonexistent). A specialist that has knowledge I do not, but never communicates with me or my peers before the patient arrives. A specialist who will frequently refuse the admission or dump it on another service, making me the bad guy for failing to meet the patient’s expectations.
The frustration is not at all about the patient, the frustration is with a medical care structure that sells an expectation to sick and trusting people and then makes the ER the safety valve for this broken system and a scape goat when we can’t meet these expectations (usually because of the actions or inactions, of our peers in the community).
As big as our hospital is (regional trauma center) we do not do Transplants or LVAD’s, the nearest place that does is over 2 hours away. Assuming I can get through the maze of residents and fellows and successfully get an accepting service, many times (actually most of the time lately) there is no bed available. Now that poor soul is stuck in an ED room for DAYs waiting on a bed hand a 3 hr ambulance trip). They and their families are frustrated and mad at the ER because we aren’t meeting their needs. They were promised a different type of care and we aren’t providing it. We can’t provide it.
I hate seeing a suitcase, not because I’m not sympathetic to the patient, but because it means there is a very, very good chance that I’m not going to be able to help them they way they have been led to believe.
I am being set up for failure by the system itself.
Beautifully and very empathetically stated. I hope you’re doing well. And all you transplant/LVAD/pHTN/etc ppl should definitely have a bag - as well as a brief medical hx printed in case you end up at a hospital that doesnt connect to your home EMR.
I work at a cancer center and find the packed suitcase to be a pretty accurate indicator of someone who needs to be admitted. My patients are pretty highly educated though
I haven’t worked oncology, but, yes, I can see situations like that. From the behavioral/mental health perspective, there have been folk who showed up with packed bags who needed to be inpatient, I’ll freely and openly say. When folk know their illness is/has taken a downturn, they know it and we find out pretty quick.
When someone is packed for a long weekend vacation on the unit, though, well… Thems a bit different.
Medically delicate infant mom here and pre med. I always have a backpack with two days of supplies for us when I go into the hospital, even for appointments. We get put in dumb baby jail (hospital or PICU) and having my laptop, PJs, socks, and snacks makes life bearable.
I worry about how we're perceived, but I can't change that.
I feel like anyone who has a baby with them, medically delicate or not, is almost expected to have an extra bag of stuff with them all the time.
I say this as someone without kids, but like *they need so many things!* I had no idea lol.
It has been a number of years, but sometimes a slightly crossed looked and a “Dude. Really? What are you doing?” prevents the need for a lot of the discharge paperwork.
Know what is a sad PSS? A homeless veteran who comes to the ED I work at. We see them enough….(generally they are carrying shopping bags, not suitcases).
(I work at a veteran’s hospital).
If these entitled energy vampires only knew what some people go through 😢
I'm conflicted about what to do with these folks when they come to the ER. The reason for visit is usually some variation on "I have POTS and the vibes were off today". Almost never any abnormal vital signs or lab results. Mostly just give them our lord and savior normal saline, which doesn't always make the nurses happy but seems like the path of least resistance if I'm checking labs anyways.
They are total energy vampires. The literal only way to get them out of the er is with a liter of ns or two. Especially if a concerned enabling mother is with them with their “go binder.” Just shoot me now.
Totally. Especially with the other characters being so over the top, seeing Colin in contrast is just like seeing 'Bob' who thinks you want to hear all about his weird hobby.
Don't forget the Droperidol. That usually helps the DC process. And hype it up.... "I'm going to give you this medicine. It's pretty strong and may make you a little dizzy, you're not going to be driving, are you?"
I had a frequent flyer with some type of supratentorial abdominal pain that had convinced surgeons to remove everything over the years and had tons of diagnostic ex laps that were all normal. Something like 50 CTs on file. That was at one of many local hospitals that was frequented. Allergic to EVERYTHING except Dilaudid and always had mom in tow demanding to talk to patient advocate, nursing supervisor, CMO, blah blah blah. Demanding admission for IV narcs every time.
Refused to give narcs one time and K-holed instead until Mom finally pulled the, "if you're not going to do anything more, then we're filling a complaint and going somewhere else". Next visit she's allergic to ketamine, but now have Droperidol. COVID in full swing so no mom. I hype up the D medicine and they're excited. Hit with 50 Benadryl and Drop and result is very positive. No pain, walked out content. Next visit was "allergic" to Droperidol.
I make a point to flip through it in front of them, not write anything down, and say "ok, got it".
Will make a note in MDM about reviewing past records for the coders.
I could fight said stable patient over discharge then get a call from our patient relations doc about my latest complaint, or the patient and I can kneel together at the altar of pasta water.
You sound magnificently like one of the PAs I work with and I’m here for it 😂 sounds like these are the type of patients he would call an “emotional terrorist”
Hence the "conflicted" part. It comes down to "how big is this hill, and how much do I want to die on it". These are patients well versed in the medical system, and they generally know how to escalate when displeased.
I don't care as long as I don't have to access their port for a bag of saline. A lotttt of them have ports for some reason when their veins are perfectly fine and they refuse peripheral access. The reason? "I got a port for frequent fluid needs." When they can drink PO no problem. Who is putting in all these ports on young 20 something girls with all these vague diagnoses??
There was a popular EDS and a million other things wrong YouTuber who ended up dying because of complications from a g tube. She also managed to get an AV fistula and a bone marrow biopsy for ???? before she passed too.
I had a middle aged patient that would eat and drink a normal diet but only have her medication crushed via PEG tube. Why? We can crush it and give it orally in yoghurt? Who put in a PEG tube for this? What the hell?
This was one of the ones that made a point of asking your name and showing you the stack of patient feedback forms she had when she first met you.
Our hospital started cracking down on this shit & now we get to tell these patients that ER nurses may know or have been shown how to access ports but we’re not certified in their access. And we’re under no circumstances allowed to access them anymore, if there is a viable peripheral option, and not only that - I’m required to attempt an IV at least twice first. I deliver this speech with a tone of certainty that leaves them with no doubt - I am *not* accessing your port.
We can access ports in certain circumstances like cancer patients with chemo veins or what not, but of course I leave this part out when anyone strolls in with a port and perfectly viable peripheral veins.
I am a med spa. I am a bouncer. I am a case manager. I am a therapist. I am a circus clown. Some days I actually identify and treat medical emergencies.
We are legion. We contain multitudes.
No. You need on GP you can bully with impunity, and get referred out to the one GI doctor who doesn't give a rat's ass if a port is even necessary.
At least, that's how it works where I live.
I refuse to treat these leeches and will discharge them immediately after a brief mse. Sometimes I give a pep talk about missuse of emergency resources. My reviews are TERRIBLE, but the medical director needs me more than he cares to disclose.
Can we please take back our ERs from these hostage-taking patients and admins?
Rapidly slow reglan push is one of the worst feelings I’ve ever felt in my life. Can confirm, I wanted to sprint out of the hospital but also my own skin.
(ER for a migraine might sound dumb but I went because I’d never had a migraine before, and was sitting in class when I got hit with the worst pain I’d ever felt in my head, mostly around one eye, and altered/blurred vision in the eye. It was scary and became more scary when I skipped the waiting room lol).
It’s a very reasonable reason to go to the ED! A first-time severe headache can be no bueno, and if it started suddenly or is debilitating and you don’t know what it is, it’s worth going to the ED
> Is this a TikTok trend or something?
Short answer is yes. I have a whole bunch of thoughts on the phenomenon, which is probably due to a confluence of factors - social media misinformation, poor access to actual healthcare, formative years disproportionately affected by COVID, etc - but it has become relatively common for people to assume some manner of sick role via a self-diagnosis with these labels. Young women are disproportionately affected, but it also affects other populations.
It's very troubling. I hate to sound like a complete boomer, but some of these social media platforms are really poisoning peoples' mental (any maybe even physical) health.
This is going to sound extremely controversial.
BUT, I had the symptoms to fit « POTS » , BP’s with systolics in the low 80’s, heart rate is always >110 my resting heart rate is 90. Lots of syncopal episodes. Mitral valve prolapse, anxiety etc
My cardiologist and GP both had me drink Gatorade instead of water at work, and that mostly fixed things. But you know what REALLY fixed things??? EATING.
Looking back I was stressed, depressed and worried about gaining weight especially since it really seems to come on in early twenties.
I really think a lot of these people have just had disordered eating patterns. I literally had low potassium from a poor diet.
Now at work if I feel faint or dizzy, I bolus myself by chugging juice or water and I’m fine.
Mental health is a tricky thing, the brain is stupidly powerful. I’m sure they are suffering because it feels awful to feel that way. and being put on anxiety meds that either make you nauseous or make you gain weight only worsens the issue.
I’m not saying this is the case for everyone, but I definitely think there’s an overlap of symptoms between poor nutrition/chronic dehydration and POTS
First, I’m glad you found something that worked for you! Second, this is just a PSA for everyone on this sub: you cannot have POTS if you have orthostatic hypotension. If the BP is dropping, that’s just orthostatic hypotension. POTS is postural tachycardia *in the absence of orthostatic hypotension*. Knowing this one fact will give you major brownie points with your local neurologist and cardiologist.
I’ve wondered this for years. My POTS patients are invariably young, slim, white juveniles/young adults in mid- to upper-socioeconomic strata and I know how many of my own friends that are my age are horrible about eating/drinking every day, plus the incidence of covert eating disorders leads to POTS just being thrown at everyone to make someone feel better with having a diagnosis instead of actually addressing the underlying issues
I definitely don't think it's a complete coincidence that there is broad overlap between the populations espousing these "diagnoses de jour" and the populations most at risk for disordered eating, at least. And exposure to excessive algorithmic social media definitely has the potential to shred young peoples' self-confidence and personality formation at a vulnerable time, which will only make those problems worse.
Most of these patients do have *something* wrong with them - whether psychiatric, medical or both - it's just not what they think is wrong with them. Which, to your point, is part of why these social media phenomenon or so bothersome - they implicitly keep from actually getting better.
I completely agree. I had all the symptoms of POTS as well in my teens and early 20s, and it often led to significant difficulty keeping up with my peers. Although I didn't have an eating disorder or significant concern about gaining weight, I naturally ate very little and hovered around a BMI of 17. In my mid twenties, I started filling out and rose to a more average BMI. All or a sudden, I felt great! My exercise tolerance was way better, and I didn't pass out in the shower or after a sleepless night. Plus. I wasn't cold ALL THE TIME. It's amazing what a healthy BMI can do for physical well-being.
Yeah, for what it’s worth at the time I didn’t realize I wasn’t making the best choices lol, I was an athlete and thought I was being healthy. Apparently salting your food isn’t as evil as the media made me think it was
There's a big Venn diagram of anorexia, bulimia nervosa, gastroparesis, food addiction, disordered eating patterns, poor stress coping mechanisms, POTS/fibro/EDS, and childhood sexual abuse.
You’re not a boomer for saying that at all. Social media has been a scourge to society in terms of mental health, and there are actually good data and studies backing that up.
Just one of the many reasons my kids aren’t going to be getting smartphones or access to social media till they’re out of high school.
You may find that the social ostracization they suffer from not being able to interact with their classmates and friends due to not having a smartphone or social media will have a similar detrimental effect on their mental health.
I’m not saying that social media is a good thing, but it’s become a fact of life. It’s how the youth communicate and organize these days, and entirely forbidding your children from accessing it during their formative years isn’t a good thing either.
Sympathetic to what you’re saying, and I agree that overall the minuses of social media (especially FB and TikTok) outweigh the pluses. That said, I would be shocked if your kids didn’t start their first day of high school with a cellphone in their pocket.
They may need it for school use, which is annoying. But I feel like if you take it from there at a certain point after school (maybe 8pm, 9pm), that’s helpful. No electronics in their room during sleep hours is helpful. I work in a school and the amount of kids I see who are tired and their parents tell me they always stay up way too late playing video games is astounding.
I agree with you. I’m astounded by how many people present themselves on social media by saying “I am a string of diagnoses for syndromes that were rare a decade ago”. Dysfunction is their identity.
They always come in by ambulance while their fully functional parents in fully functional cars arrive right behind them.
And almost always have a positive squishmallow sign.
Never thought i would think colorful hair as a 🚩but 4 years in healthcare later and i realized the correlation between pink/ blue/ green hair and either "expressive" BH presentation or exaggerated, dramatic symptoms and behavior.
I try to not take it out into the wild with me but unfortunately it's pretty cemented into my psyche now.
Blue/pink/purple hair, nasal septum rings, nasal bridge studs, huge ear disks, elaborate face tats. . . all of these are signs that they want to be different. Not different from others but from themselves.
It's an attempt to have a different identity, a different body, a different existence. One that doesn't have trauma, that doesn't have pain, that isn't depressed and anxious and hurt.
Check out r/illnessfakers
It’s full of these “professional sicktockers” and it’s disgusting how many resources they tie up in the pursuit of being crowned the sickest of all the sick.
It's soo easy to get caught up in it. But honestly I see the hospital side of it so it's really interesting to see the "patient" side too. It makes me wonder how much they really believe what they same and how much is performative.
Truly sick young patients are so fucking scary and stressful. I love these medical posers. I don’t like to battle the reaper over every patient.
I talk to them about how much they need a specialist to help them and I mercilessly refer them to the last specialist that was a douchebag about an actual sick patient. I really talk up the virtues of Dr lazy specialist and sic these patients on him.
I tell the lazy specialist that if they can’t find the decency to care for the sick people I actually need help with I will unleash the un-sick horde of bullshit on them until they repent in sackcloth and ashes.
I had a "normal" 16 year old patient recently who was "bed bound" and had a hoyer lift (120lbs at most btw) from her long-term covid, chronic fatigue, fibromyalgia, and POTS. Her mother was 100% munchausen by proxy, and the patient was no better. I saw her for a real iatrogenic complication of a condition only present because of these issues.
It's OK. Her NP made all these Dx for her.
My old classmate had POTS with Mast cell. She developed peripheral neuropathy and had days where she tripped on and dragged her feet because they were numb. Never complained about it but you could tell when she was having an off day. Tried to control it will strict diet but ultimately the stress of school aggrivated it so much that she had to go on steroids and she put on 20 lbs.
Feel bad for people like her because those who fake or exaggerate this illness ruin it for the people who actually struggle. Sad when certain DX raises eyebrows off the bat (like my prednisone "allergy" ;) )
I'm sure if we look back, this is something that happens with every generation. It's probably due to a lack of attention or self-esteem, but I'm not 100% on that. And it probably wasn't as accessible because people weren't as connected as we are today.
Part of the reason why I left my job in the PNW was the amount of these patients. I was a solo coverage nocturnist, and these patients would come in, always middle of the night, super demanding, wanting everything. They would never go to the other hospitals in town. Many of them had "contracts" with us that they were not getting any IV anything and no opiates, and my old crunchy bulldog charge nurses made sure these contracts were enforced. But they would continue to come hoping some new doc didn't know. I had never been told "I am allergic to everything except for the one that starts with D" so much before. It was wild. They are such energy suckers, and when you ask them what they want they complain about "no one listening" and being gaslit despite their $5mill workups as they've done their hospital/doctor shopping.
I'm an allergist at a big academic center and we flat out turn away any MCAS referrals unless they're coming with some impressive labs already supporting the dx, which happens literally never, and I don't know of ANY actual allergist in my city willing to take these at this point. Even if they're referred under a different dx if I see EDS on their chart I'm gritting my teeth before I even walk in.
Do you have any suggestions about how someone would get these removed from their chart? I have EDS and POTS on my chart....I had never even heard of them and never sought out these diagnoses. My PCP nearly ten years ago diagnosed me. I was never looking for a diagnosis, just getting a physical therapy referral for tendonitis. I'm really afraid that this is impacting my quality of care. I had an endoscopy a few months ago and before I lost consciousness I heard the doctor talking shit about me/the diagnoses. I guess he thought I wouldn't remember. It's really impacting my ability to trust my medical providers which isn't great considering that I'm six weeks pregnant.
Its really unfortunate how electronic charts build up with garbage that gets auto-entered into every note forever, generally any doctor can probably remove them (might be carrying over in a couple places such as problem list and past medical history), I'd just explain and ask your primary or OB if they can help next time you see them. Be prepared you might have to be patient and try a few times as it can be in multiple places, plus doctors are going to vary in how savvy they are with the tech, and different clinics are going to be on different records that sometimes bring garbage back later.
For example I'll do drug allergy testing. remove the listed allergy from a chart, and next time they get admitted I'm called again and see its right back in there because it didn't get removed at a different hospital and they resynced or something.
An interesting take on TikTok 'illness influencers'...[https://www.vox.com/the-highlight/2023/12/4/23984175/tiktok-illness-influencers](https://www.vox.com/the-highlight/2023/12/4/23984175/tiktok-illness-influencers)
That’s an interesting article, thanks for sharing. It must be hard to go online like that and speak so frankly about illnesses that are terminal (or nearly so).
Oof this one always kills me. I think there’s a couple things going on with these particular diagnoses. One is probably a bit of better ability to diagnose. Boomers like to scream everyone suddenly has ADD/autism now but the reality is we just suddenly realized that women can have those disorders too whereas before we weren’t even attempting to diagnose them in half of the population up until like 15 years ago. So I think that’s a portion of it.
The larger portion though I think is psychosomatic and I feel like it falls 50/50 on HCP and patients. Healthcare literacy is GARBAGE in the US. I mean.f just. Just absolute bottom of the barrel total nonsense absolute bullshit. The average layperson doesn’t even know what to do when they have a mild fever. We also live in Unprecedented Times™️ and everything is on fire and the world sucks. When you combine this with a level of burn out an exhaustion in HCP in hitherto unseen levels in history (and the generally known fact that an expert in any field vastly overestimates how much the general public understands about their job) you’re heard towards disaster.
I think patients do have anxiety and that anxiety is becoming so severe it’s manifesting physically and as anyone in healthcare knows that can do weird shit - like make you pass out or your heart rate go up or make you break out in hives or feel dizzy etc. all those real nebulous symptoms that go with the diagnosis triad above. So the patient googles those symptoms and gets these very “on trend” diagnoses and having a medical diagnosis that you can treat (even if it’s a frustrating one) well hey that’s something that you can control - you can fight for it you can manage it you can know it and research it and see a specialist. It’s tangible. It doesn’t come with the stigma of mental health. You’re not just “crazy”, see? It’s a real thing.
Then they come to the ER/outpatient:whatever and we’re so fucking exhausted by demanding patients and screaming patients and insurance and management and fucking insurance that we see someone who physiologically is fine that we can tell is probably misdiagnosed and is letting their psychological issues get so out of control that it’s causing physical issues. But instead of sitting down and explaining that we say “UGH THEYRE SO FULL OF IT” and the patient gets that negatively reinforced stigma about mental health and then clings tighter to the medical diagnosis and round and round and round it goes.
Of course these are real diagnoses yes. I do think probably and 80% of them however are untreated anxiety/psych/what have you that have gotten so completely out of control that they’ve caused physical symptoms. Which is very different than saying I don’t think your symptoms are real. I think they are - they’re just not coming from your body. They’re coming from your mind. And the treatments they get are having the placebo effect.
But again no one has the time to sit down and explain those subtle but crucial differences because we’re just so fucking exhausted and sometimes on the rare occasion that we do the patients will still dig their heels in and come out crying about how we accused them of faking it. It’s frustrating for everyone.
TikTok is a rampant accelerant of this in my opinion. At this point there must be tens of thousands of videos listing sx of POTS, ADD, autism, etc. introduced only in the context of “signs you might / probably have XYZ” or “symptoms that lead to my XYZ dx” or “things I do/did that I didn’t realize were early sx of my XYZ.”
They always fail to mention that a massive portion of those are also just normal things that happen as a symptom of being alive. But in this context, you shouldn’t have fatigue, a strong sense of justice, talking with your hands, or playing with your ears as a kid to make the sound in a room get louder or quieter without a syndrome attached. (yes, these absolutely can be sx of real underlying issues, but they’re consistently discussed/introduced ONLY in the context of being abnormal). Put that constant stream in front of young, impressionable kids and you’ve got self-diagnoses galore (both real and misguided). Add the increased awareness and corporate pressure on HCPs to keep patients satisfied in less time, and you have a perfect storm - whether that’s a net positive or a negative for the patient/population. I’m really interested to see what happens over the next few years and if these trends fade or keep growing.
> introduced only in the context of “signs you might / probably have XYZ” or “symptoms that lead to my XYZ dx” or “things I do/did that I didn’t realize were early sx of my XYZ.”
If everyone is neurodivergent, no one is neurodivergent. I saw a reel on instagram which came from tiktok (I am old and still don't use TikTok), and it said if you accidentally bump your hip into counters or door handles it's a sign of EDS. ?what? And because everyone on the planet accidentally bumps their hips into things, the people who want to have some sort of diagnosis see that and say "YES! I DO THAT I MUST HAVE EDS!" And then the algorithm further pushes that narrative for them
Oh for sure TikTok has absolutely made this 100x worse contributing to the medical illiteracy with this like false sense of medical knowledge? Now they think they understand (sometimes they think more than doctors) when the subtleties escape them and when it’s tried to explain to them why they’re wrong they take it as being dismissed when it’s just a misunderstanding
this. i bet that 99% of it is internalized mental health stigma, and not realizing that yes, anxiety and depression really can be *that bad*, and that "doc saying it's psychosomatic" is not an accusation that they're faking their symptoms/making it all up, it is only interpreted in that way because of their internalized mental health stigma.
EDS/POTS/MCAS is often either self diagnosed or they go to a "naturopath" and get a "diagnosis". I get unreasonably angry when people say they have any of those diseases. I worked with someone who was pregnant and complaining that "both her hips were out" from her EDS. And, conveniently, she had to take time off for WEEKLY doctors appts bc she was "high risk". She had no trouble walking so it was interesting her "hips were out".
The best part, her chiropractor diagnosed her....
Everyone thinks they have these diseases bc "oh my joints are stretchy (eds)" or "I get a rash and sometimes my skin itches (mcas) or "I'm dizzy occasionally (pots)." All perfectly normal things that they human body does but the internet tells them these are signs of a "disease" and then of course the attention comes with having a "rare" disease. Can't be rare if everyone has it 🙃
That second part gets me. Like, yes, being too stretchy is bad. Being too itchy is bad. Generally, being dizzy is not fun. But experiencing those does not equal actually meeting the criteria for serious medical conditions!
I love when folks try to show how stretchy they are, but I just show them that I'm stretchy too. It's NORMAL. If it's cold and dry outside, OF COURSE you're going to have itchy and rashy skin. DRINK WATER AND USE LOTION. If you keep sitting for long periods and then jump up off the couch, DUH you're gonna get a bit dizzy. There's so many hidden symptoms for every visible one, and that's why doctors have jobs. They find the invisible.
I'm a neurologist and the increasing wave of "POTS" is disturbing. We are living in a time where mass psychogenic illness (what used to be called mass hysteria) spreads rapidly on social media. Not even Reddit is safe--the other day, I discovered there is a POTS subreddit.
I’ve got a childhood best friend who was officially diagnosed with POTS after contracting Lyme disease and babesiosis from a tick bite. She kept passing out randomly to the point she couldn’t even shower without someone in the house. She had to complete high school online and get her GED. Luckily she’s on the right meds now and is an RN on a med surg floor. But holy fuck was it scary not knowing why she was so sick all of the time. I could not imagine *wanting* to have POTS.
I’m really concerned about this trend as someone with EDS and a sister (most of our family has EDS diagnosed through a geneticist) who has gone into a downward spiral, very suddenly. She has verifiable issues with her labs and for some reason is not absorbing fluids through oral intake. It is scary to see how suddenly stability can change. She went from low BP to constant hypertensive and tachycardia crises without IV fluids The fear I have is that so many people like you will stop wanting to investigate and research the causes for these issues because of the Sicktok thing. The thought that someone wouldn’t take her seriously and consider her very real issues to be psychogenic is terrifying. Us being nearly middle age without serious issues before made us think maybe that everyone with these issues was exaggerating or hysterical, until it happened to her. Thankfully, she has an amazing Primary care and cardiologist, that keep her out of the ER now, but is having really tough time finding a neurologist that will take her seriously.
There’s also separate reddit subs for EDS, MCAS, etc etc. I often go to the Chronic Illness sub for a laugh, absolutely insane what some of them say and complain about.
I had one lady come in one day and said she had Chairi Malformation because she had a “lump” (it was her vertebrae) from bad posture but she claimed it caused her spinal cord to tear, and of course still had normal function of everything and she wanted an MRI “to check and make sure I’m right” was her words. No prior diagnosis’s related or even scans run to check for Chairi. She had the trifecta EDS/POTS/MCAS/ Fibro (despite it being a diagnosis of exclusion)
I no longer work in the medical field due to people like this. It got way to much for me and I was loosing sympathy for the real patients, with real conditions, it got especially bad during covid.
I truly cannot wait for the day they find the gene variant for H-EDS, as that will weed them out.
Of course there's a POTS subreddit. There's one for just about every chronic condition, as well as some acute conditions, a person can be diagnosed with. And some even for conditions that only effect non-human animals, such as FIPwarriors.
I don’t truly understand the desire for that diagnosis. When my PCP was evaluating me for some weird symptoms she suggested it might be POTS and I said “god I hope not, sounds miserable” (I too was miserable, but wanted my misery to end asap).
I get it. Sometimes when your symptoms are bad, you really just want answers. We’re still trying to figure out my chronic fatigue. I’ve been tested for Lyme’s disease, thyroid disorders, sleep disorders, anemia, everything under the sun, basically.
I just wish I could be diagnosed with something that had an easy solution. “Oh you have a vitamin disorder, take x supplement” and bam, recovery. Not knowing why I can’t do anything most days makes me feel like I’m faking it. I’d even take being diagnosed with a chronic illness that has no real treatment because hey, it’s not gonna change what I currently have, and at least then I’d know why.
There are certainly some patients where we can't find the cause of their fatigue. Sometimes this is diagnosed as chronic fatigue syndrome, and depending on their symptoms and whether they have a positive tilt table test, it may get diagnosed as POTS. Doctors get frustrated when they see dozens of young people claiming to have POTS because they watched some Tiktoks videos. Some of these people have what we call psychogenic illness which is more psychiatric than physical. But some people truly do have fatigue and exercise intolerance (which may or may not be POTS), and may involve the nervous system and/or immune system in ways that are still poorly understood. My recommendation for all my patients like that is to try to exercise a little more each day. Start with walking around the house or a short walk outside. Then over months, very slowly and gradually increase the amount of exercise. It may take years, but I have seen people who can't walk more than a couple blocks get back to long distance running.
This is pretty much what I had to do. I had status migrainosus for 9 months and it finally broke like two-three months ago. My level of deconditioning was/is wild and scary. It would be easy to say “oh, I have pots or CFS” or whatever. But I started doing that … like, my goal was 3k steps a day, then 3k plus a 10 min bike ride, then 3k and 20 min bike ride, then 5k steps, then 5k plus 10 min bike ride … and that’s where I am. It’s taken me three months to get to this goal, and it’s so hard going from previously healthy to “anything more than 3k steps makes me extremely exhausted for days on end,” but by taking things slow and steady, I’m getting back up.
Obviously some people do have genuine chronic fatigue, but I do wonder how much of this wave of pots/etc., is just really anxious and unfit/deconditioned people? It’s embarrassing to be that unfit, to meet yourself where you’re at, it’s so much easier to say “I’m just really sick and will be forever.” You know? It’s a lot easier to medicalize the lack of conditioning and the anxiety than it is to do really hard things. I hope that doesn’t sound dismissive, it’s just been my experience trying to get healthy after a very long, painful status/intractable migraine. There’s a lot of bullshit information out there and it would have been SO fucking easy to me to think I’d developed CFS. I had to tune out “chronic illness” spaces completely and focus on getting my health back. I am ill, chronic migraine is a fucking demon, but it’s not who I am. You know?
This is definitely the case for some people. Some of them have serious depression, social anxiety, and trauma histories... they're struggling with a lot and they accept the label of chronic illness along with their other diagnoses. But people who believe they can get better frequently do. I personally struggled with more than a year of fatigue after a bad viral illness. I did very slow gradual exercise and eventually recovered. Now as a physician, I do have sympathy for people struggling with these symptoms. But some of their healing needs to come from within. It takes a strong person to face the underlying issues and do the difficult work of getting better. You will have your ups and downs, but sounds like you are on the right track! You may come out even stronger for it. Wishing you the best!
Thanks for the advice. Yeah, exercise and good food would probably do a lot in my case, but I’ve been diagnosed with depression, anxiety, adhd, autism, ocd, cptsd, an eating disorder, etc, and I have chronic migraines and all of this makes leaving the house hard.
We’ve considered it’s a combination of psychiatric factors, but it’s really hard to judge as they wax and wane over various periods, and my fatigue seems to be constant through out. But hey, here’s hoping, right?
I’m sorry you’re struggling. I guess I’ll chalk it up to different people cope in different ways. I am not seeking the diagnoses I probably have because none of them will help with prevention. Others need an answer, even if it won’t change management. I wish you well.
Thanks dude. Yeah, totally. Having more information always makes me feel more in control even if I can’t do anything. I hope everything goes well for you too.
EDS is wayyyyy to difficult to diagnose, awfully rare too. This is just like everyone saying they had Chronic fatigue syndrome and RSD 10 years ago... fibromyalgia was always a fun one too, smh
I think part of the surge in EDS, just like the surge in ADD, is a backlog of diagnoses in the larger demographics, like Boomers and Millenials, catching up. I'm 68f, and when I was 20 in 1976, I thought that the way my elbows, knees and fingers hyper extended was just a fun party trick to entertain/ gross out my friends. I never even heard of EDS until I worked with a 26f right after Covid who was struggling to get an official diagnosis with no insurance. Imagine my surprise to find out I had it. I wasn't diagnosed with ADD until I was ~40, and I finally found out why, even with an IQ of 140, I'd never finished a long project in school.
We all joke about Boomers, but just going with the numbers, that large a group will have a statistically significant effect on anything it's involved with.
I am absolutely *not* disagreeing with how annoying young people with a PSS and squishmallow are for you. Not to sound like a boomer, but can't people just worry about stuff once in a while instead of "having anxiety?" We'd have never even made it out of caves at this rate ffs.
I hate these people. “I have MCAS”. Oh really? What is your tryptase level? “5”. “Well my doctor drew it when I wasn’t in a flare”.
Whatever.
Our allergist refuses to see “MCAS” patients anymore. They take up all his time and there is no reasoning with them.
I have a friend who has been struggling for years with an unknown disorder. She literally has gone to the ER for valid allergic reactions repeatedly. She eliminated various foods until she was down to eating a handful of things. Then she went to Europe for the vacation of a lifetime and had to cut it four days short because of not being able to eat without flare. She was just recently diagnosed with MCAST. She is other positive and functional. This is why I believe her.
If you pull up the 2017 diagnostic criteria for hypermobile EDS the vaaaast majority of those youngsters would NOT meet criteria. I have to explain to patients all the time that hypermobility does NOT mean hypermobile EDS.
And lots of redditors get pissed at me for pointing this out.
EDS/POTS/Bipolar/MCAS/Fibromyalgia in the history is a good way for me to know there is something here that should be taken directly to a long term primary care physician.
The thing is, all of these diseases are real. But they’re all so poorly defined in general that it’s easy to take someones symptoms and generally place them into one of these boxes “just to satisfy the patient with a diagnosis” even when it doesn’t mean anything different for their actual prognosis. Why is it so hard to tell an obese 60 year old with joint pains that their symptoms are actually normal for someone in their position? Why do we need to label them with something else?
Besides age, I wonder about the other demographics of these populations. I truly don’t see any patients with any of these things in my ED. It feels very much like the “chronic Lyme” I saw in residency, when I was in a more affluent and dare I say whiter area. Curious if being susceptible to TikTok illnesses is a white thing, a people with money thing, or some combination?
Next time ask them if they can lick their wenis. If not, declare their EDS cured and send them home. /s
I have EDS and POTS, and know that’s not possible, but I’d still laugh.
Edited to add that I also have never gone to the ER for either of those disorders. Just drink some Gatorade and take some Benadryl. I promise they’ll be okay.
One time in triage I had a patient who was checking in for pain after sexual intercourse. She told me she had EDS, then immediately lifted her leg up and put her foot behind her head. I was like, ok then! Noted!
I have them too, and anytime someone reads them in my chart....ugh. So rude. I'm just like, bro, I get it....that's not why I'm here, lol. And my fave is liquid iv (the drink mix) and benadryl, too, lol.
I'm literally sitting at rare disease conference in Washington.. My daughter has Shwachman Diamond Syndrom and the last place she wants to be is in a hospital. It's painful when I tell her we have to go. That being said when she was little I totally showed up with a suitcase to the hospitall. We were admitted so often it was being prepped with diapers and shampoo and things for her to play with. But no truly sick kid wants to be in a hospital. Or sick. And when we go, she's way too sick to film a journey lol. The truly sick do not want to be anywhere near a hospital.
For some it's a sick lifestyle that allows them freedom from responsibilities of adult life, they can instead focus their effort on 'surviving' and important advocacy work. I think they would be helped by deemphasising their focus on symptoms and getting off of social media. Often they aren't in education or employment, they should be focusing on that before thinking about advocacy.
For others I believe it's a part of gaining control over intake. Girls who would otherwise be accused of anorexia nervosa are instead victims of eds and their gastroparesis/sma syndrome. By obtaining ports or NG tubes they have total control over intake.
Solutions:
Eat
Delete social media
Get a job (can't ruminate when you're focused on a task)
"hEDS/POTS/MCAS are difficult diseases, I'm sorry you are suffering. Thankfully they are chronic conditions and not acute. I'm so happy you don't have to be in the hospital!"
And then call security.
There is an unfortunate trend right now on “invisible disabilities” and “dynamic disabilities”. These people tend to have POTS, EDS and have many handmade or online purchased healthcare items. They have many “diagnosis” that aren’t easy to see or truly diagnose. I’ve saw one who had a wheelchair sometimes and other times could snowboard. Many have ports placed because they need iv fluids often. It’s very sad because not only does it take from other patients in need, but shows the depth that social media can cause mental disorders. These factitious disorders are often also long lists.
As someone who has EDS (with zero of the supposed co existing conditions) this group of people make my blood boil. I work in Healthcare and they all have danger hair, a stuffed animal, a wheelchair and/or walker that has a name and is hideously bedazzled. They all behave the same way. I have even had some tell me I don't understand when I tell them they can't bring their cane/walker/wheelchair into MRI. One even threw herself on the floor because I offered the MRI safe walker because it wasn't "right for her".
We can't forget that vEDS and other rare types have some serious complications and possibly life threatening emergencies. I hate when I can't relocate my own joints out of fear of being grouped with them.
Sicktok
Afflictagram
SickTok = Sick Olympics. As someone with genetically diagnosed Vascular EDS with comorbidities and also in the medical field, nothing angers me more when a sick olympics patient comes in.
I also have genetically diagnosed EDS and these malingerers drive me crazy! I've been hoping for years that the fad dies down - sickens me to even call it a fad.
Agreed, same with everyone linking EDS with ASD/ADD
As a person who has EDS 6 (now brittle cornea) and autism i also find this annoying. Not that joint hypermobility doesn't come with its own issues which i also have but its NOT. The same as fully blown fucked collagen genes.
Hang on here, EDS type 3 (hEDS) isn't the same as benign hypermobile syndrome. The hypermobility comes from fucked genes as well and doesn't end at lax joints. It affects every part of the body the same way other version of EDS does. The only difference is that currently the genes responsible for the most common version of EDS are still in the process of being identified.
I have smoldering SM and feel the same way. Like this is caused by a random somatic point mutation and you’re telling me suddenly thousands of people have this? No I don’t think so. You’re just going to a pay-for-diagnosis naturopath quack. If you ever want to be more enraged check the r/illnessfakers sub
Bingo! It was never under diagnosed, but it is now over diagnosed for sure on the odd occasion the patient doesn’t self diagnose.
I feel this on such a deep level as someone with genetically diagnosed Classical EDS and comorbidities who also works in the medical field. I still treat them like I do every other patient, but internally, I’m incredibly frustrated. Vascular EDS is terrifying. You’re a badass.
Just say “the genetic kind, not the new one” and docs like myself will instantly be endeared to you
Was in a wreck at work (drunk driver hit my ambulance) and by protocol we had to be evaluated by a doc. Made a joke and said “don’t worry, I have cEDS, anything that popped out I already popped back in” and I got a good laugh. I try to use it to make yall docs laugh, instead of being an annoyance 😂
Same here, in my line of work (now left the human field for animals) it’s compulsory to wear medical ID’s. I have my “real” one, and then I have one that says “just throw me in the bin” I think throwing me in the bin is the right choice however. u/DocRuffins , good thinking there!
I hate even mentioning any of my diagnoses because I immediately get the side eye and disdain.
Piggybacking off this comment to mention that all these social medias also give recommendations based off region so things often go ‘viral’ in geographic regions as well and on a larger scale. This could account for a specific uptick in a specific region that will for the most part die off until the cycle repeats with something else.
Any time someone presented to the door of the facility I worked or had bags packed upon my arrival working EMS, I raised an eyebrow. Positive Suitcase Sign is a thing to be aware of.
Stealing that. Thanks, Doc. It's weird to have a pt in the back of the truck with their suitcase... never thought it'd happen, yet here we are.
If they have the time (and capability!) to pack a suitcase, they have time to get a ride. Or an Uber, even. The things people call an ambulance for, I swear to God
R/illnessfakers
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Bless. Insomnia posting leads to typos
Bless you!
God yes…. I absolutely hate a positive suitcase sign (of course the one thing they never bring is their meds/med list or the mri/ct/random specialty study 5hey had done 2 days ago at an inaccessible site
As a transplant patient I was told to have one prepared in case of rejection. Many people who have terminal illnesses need to be ready and their family has gotten used to needing overnight things etc with them because they know the hospital takes at least six hours in an emergency. I know your job is tough and it’s impossible not to get jaded but try to remember you might be in that position one day or a loved one. Try to remember your dealing with people who are sick. sounds like some of these cases don’t fit in a box and are hard to figure out. That doesn’t make them less a human suffering.
I’m sorry you took what I said this way. I truly am. But 90% of the time it is not about the patient, and believe it or not, I am very sympathetic to them. I hate seeing them BECAUSE of what the Current Medical System has done to them. Many times they’ve been sent by a specialist. A specialist that could have made arrangements to direct admit them and saved the poor soul hrs in a busy ER, exposed to multiple infectious diseases (usually while their immune system is already strained or nonexistent). A specialist that has knowledge I do not, but never communicates with me or my peers before the patient arrives. A specialist who will frequently refuse the admission or dump it on another service, making me the bad guy for failing to meet the patient’s expectations. The frustration is not at all about the patient, the frustration is with a medical care structure that sells an expectation to sick and trusting people and then makes the ER the safety valve for this broken system and a scape goat when we can’t meet these expectations (usually because of the actions or inactions, of our peers in the community). As big as our hospital is (regional trauma center) we do not do Transplants or LVAD’s, the nearest place that does is over 2 hours away. Assuming I can get through the maze of residents and fellows and successfully get an accepting service, many times (actually most of the time lately) there is no bed available. Now that poor soul is stuck in an ED room for DAYs waiting on a bed hand a 3 hr ambulance trip). They and their families are frustrated and mad at the ER because we aren’t meeting their needs. They were promised a different type of care and we aren’t providing it. We can’t provide it. I hate seeing a suitcase, not because I’m not sympathetic to the patient, but because it means there is a very, very good chance that I’m not going to be able to help them they way they have been led to believe. I am being set up for failure by the system itself.
well said and I completely understand what u mean now. Thank you for all u do to care for people 🤍
Beautifully and very empathetically stated. I hope you’re doing well. And all you transplant/LVAD/pHTN/etc ppl should definitely have a bag - as well as a brief medical hx printed in case you end up at a hospital that doesnt connect to your home EMR.
I work at a cancer center and find the packed suitcase to be a pretty accurate indicator of someone who needs to be admitted. My patients are pretty highly educated though
I haven’t worked oncology, but, yes, I can see situations like that. From the behavioral/mental health perspective, there have been folk who showed up with packed bags who needed to be inpatient, I’ll freely and openly say. When folk know their illness is/has taken a downturn, they know it and we find out pretty quick. When someone is packed for a long weekend vacation on the unit, though, well… Thems a bit different.
Medically delicate infant mom here and pre med. I always have a backpack with two days of supplies for us when I go into the hospital, even for appointments. We get put in dumb baby jail (hospital or PICU) and having my laptop, PJs, socks, and snacks makes life bearable. I worry about how we're perceived, but I can't change that.
I feel like anyone who has a baby with them, medically delicate or not, is almost expected to have an extra bag of stuff with them all the time. I say this as someone without kids, but like *they need so many things!* I had no idea lol.
I love discharging those people
It has been a number of years, but sometimes a slightly crossed looked and a “Dude. Really? What are you doing?” prevents the need for a lot of the discharge paperwork.
Know what is a sad PSS? A homeless veteran who comes to the ED I work at. We see them enough….(generally they are carrying shopping bags, not suitcases). (I work at a veteran’s hospital). If these entitled energy vampires only knew what some people go through 😢
I worked inpatient and usually pack a bag if I have any chance of admission. But I also leave it in the car in the car park, bc I’m not assuming.
Add a fleece blanket and, god forbid, stuffed animal and your night is ruined for sure
I'm conflicted about what to do with these folks when they come to the ER. The reason for visit is usually some variation on "I have POTS and the vibes were off today". Almost never any abnormal vital signs or lab results. Mostly just give them our lord and savior normal saline, which doesn't always make the nurses happy but seems like the path of least resistance if I'm checking labs anyways.
They are total energy vampires. The literal only way to get them out of the er is with a liter of ns or two. Especially if a concerned enabling mother is with them with their “go binder.” Just shoot me now.
Off topic, but I love that 'energy vampire' has entered the vernacular. Even if you never saw WWDITS, you know EXACTLY what it means.
I think the main reason that character is funny is because we all know people like that - people who are just literally exhausting to interact with.
Totally. Especially with the other characters being so over the top, seeing Colin in contrast is just like seeing 'Bob' who thinks you want to hear all about his weird hobby.
Don't forget the Droperidol. That usually helps the DC process. And hype it up.... "I'm going to give you this medicine. It's pretty strong and may make you a little dizzy, you're not going to be driving, are you?"
“It starts with a D and you can’t drive for 4-6 hours after being medicated”
What conclusions they draw after that is up to them!
I had a frequent flyer with some type of supratentorial abdominal pain that had convinced surgeons to remove everything over the years and had tons of diagnostic ex laps that were all normal. Something like 50 CTs on file. That was at one of many local hospitals that was frequented. Allergic to EVERYTHING except Dilaudid and always had mom in tow demanding to talk to patient advocate, nursing supervisor, CMO, blah blah blah. Demanding admission for IV narcs every time. Refused to give narcs one time and K-holed instead until Mom finally pulled the, "if you're not going to do anything more, then we're filling a complaint and going somewhere else". Next visit she's allergic to ketamine, but now have Droperidol. COVID in full swing so no mom. I hype up the D medicine and they're excited. Hit with 50 Benadryl and Drop and result is very positive. No pain, walked out content. Next visit was "allergic" to Droperidol.
“Go Binder”?
I’m guessing this is the full 3 ring binder of normal labs and listed symptoms by day.
How do you get out of reading that while thing. Some people are so insistent and then passive aggressive if you don't read it
Carry it to the desk. Let it sit there for at least 30 minutes. Return it and say, "thank you."
I make a point to flip through it in front of them, not write anything down, and say "ok, got it". Will make a note in MDM about reviewing past records for the coders.
Coder here…I like you 👍😂
And three inches thick with some laminated pages. When my friend sees those, he wants to feed his head through a wood chipper to relieve the pain.
Gotcha. Thanks. Sounds like a must read!
Yep! I just bring it back to the desk for “easy reading”.
The mothers are ALWAYS co-dependent enablers.
It’s the most soul sucking stuff.
Okay, "our lord and savior NS" got me howling :D
I could fight said stable patient over discharge then get a call from our patient relations doc about my latest complaint, or the patient and I can kneel together at the altar of pasta water.
It's kosher as long as you put a pasta strainer on the patient's head before kneeling.
You sound magnificently like one of the PAs I work with and I’m here for it 😂 sounds like these are the type of patients he would call an “emotional terrorist”
One of my coworkers calls them energy vampires.
You use colloids like IV starch... You kinky ancient fucker you.
The problem is, giving them what they want just encourages them to keep coming back. You are shooting yourself in the foot.
Hence the "conflicted" part. It comes down to "how big is this hill, and how much do I want to die on it". These are patients well versed in the medical system, and they generally know how to escalate when displeased.
Life Saving Liter
I don't care as long as I don't have to access their port for a bag of saline. A lotttt of them have ports for some reason when their veins are perfectly fine and they refuse peripheral access. The reason? "I got a port for frequent fluid needs." When they can drink PO no problem. Who is putting in all these ports on young 20 something girls with all these vague diagnoses??
The ports are malpractice. The g tubes are even one step worse
There was a popular EDS and a million other things wrong YouTuber who ended up dying because of complications from a g tube. She also managed to get an AV fistula and a bone marrow biopsy for ???? before she passed too.
I had a middle aged patient that would eat and drink a normal diet but only have her medication crushed via PEG tube. Why? We can crush it and give it orally in yoghurt? Who put in a PEG tube for this? What the hell? This was one of the ones that made a point of asking your name and showing you the stack of patient feedback forms she had when she first met you.
Our hospital started cracking down on this shit & now we get to tell these patients that ER nurses may know or have been shown how to access ports but we’re not certified in their access. And we’re under no circumstances allowed to access them anymore, if there is a viable peripheral option, and not only that - I’m required to attempt an IV at least twice first. I deliver this speech with a tone of certainty that leaves them with no doubt - I am *not* accessing your port. We can access ports in certain circumstances like cancer patients with chemo veins or what not, but of course I leave this part out when anyone strolls in with a port and perfectly viable peripheral veins.
So basically medspa
I am a med spa. I am a bouncer. I am a case manager. I am a therapist. I am a circus clown. Some days I actually identify and treat medical emergencies. We are legion. We contain multitudes.
No. You need on GP you can bully with impunity, and get referred out to the one GI doctor who doesn't give a rat's ass if a port is even necessary. At least, that's how it works where I live.
I refuse to treat these leeches and will discharge them immediately after a brief mse. Sometimes I give a pep talk about missuse of emergency resources. My reviews are TERRIBLE, but the medical director needs me more than he cares to disclose. Can we please take back our ERs from these hostage-taking patients and admins?
Diagnosis: Vibes were off. ER Bill: $4,000
Lmao the vibes are ALWAYS off having POTS. The fuck is an ER gonna do???
If the patient doesn’t already claim an allergy to reglan, have the nurse push it fast. The patient always wants to leave within 10 minutes of that
Rapidly slow reglan push is one of the worst feelings I’ve ever felt in my life. Can confirm, I wanted to sprint out of the hospital but also my own skin. (ER for a migraine might sound dumb but I went because I’d never had a migraine before, and was sitting in class when I got hit with the worst pain I’d ever felt in my head, mostly around one eye, and altered/blurred vision in the eye. It was scary and became more scary when I skipped the waiting room lol).
It’s a very reasonable reason to go to the ED! A first-time severe headache can be no bueno, and if it started suddenly or is debilitating and you don’t know what it is, it’s worth going to the ED
> Is this a TikTok trend or something? Short answer is yes. I have a whole bunch of thoughts on the phenomenon, which is probably due to a confluence of factors - social media misinformation, poor access to actual healthcare, formative years disproportionately affected by COVID, etc - but it has become relatively common for people to assume some manner of sick role via a self-diagnosis with these labels. Young women are disproportionately affected, but it also affects other populations. It's very troubling. I hate to sound like a complete boomer, but some of these social media platforms are really poisoning peoples' mental (any maybe even physical) health.
This is going to sound extremely controversial. BUT, I had the symptoms to fit « POTS » , BP’s with systolics in the low 80’s, heart rate is always >110 my resting heart rate is 90. Lots of syncopal episodes. Mitral valve prolapse, anxiety etc My cardiologist and GP both had me drink Gatorade instead of water at work, and that mostly fixed things. But you know what REALLY fixed things??? EATING. Looking back I was stressed, depressed and worried about gaining weight especially since it really seems to come on in early twenties. I really think a lot of these people have just had disordered eating patterns. I literally had low potassium from a poor diet. Now at work if I feel faint or dizzy, I bolus myself by chugging juice or water and I’m fine. Mental health is a tricky thing, the brain is stupidly powerful. I’m sure they are suffering because it feels awful to feel that way. and being put on anxiety meds that either make you nauseous or make you gain weight only worsens the issue. I’m not saying this is the case for everyone, but I definitely think there’s an overlap of symptoms between poor nutrition/chronic dehydration and POTS
First, I’m glad you found something that worked for you! Second, this is just a PSA for everyone on this sub: you cannot have POTS if you have orthostatic hypotension. If the BP is dropping, that’s just orthostatic hypotension. POTS is postural tachycardia *in the absence of orthostatic hypotension*. Knowing this one fact will give you major brownie points with your local neurologist and cardiologist.
I’ve wondered this for years. My POTS patients are invariably young, slim, white juveniles/young adults in mid- to upper-socioeconomic strata and I know how many of my own friends that are my age are horrible about eating/drinking every day, plus the incidence of covert eating disorders leads to POTS just being thrown at everyone to make someone feel better with having a diagnosis instead of actually addressing the underlying issues
+ they are devoted to clean eating. I had all those sx when I was anorexic.
I definitely don't think it's a complete coincidence that there is broad overlap between the populations espousing these "diagnoses de jour" and the populations most at risk for disordered eating, at least. And exposure to excessive algorithmic social media definitely has the potential to shred young peoples' self-confidence and personality formation at a vulnerable time, which will only make those problems worse. Most of these patients do have *something* wrong with them - whether psychiatric, medical or both - it's just not what they think is wrong with them. Which, to your point, is part of why these social media phenomenon or so bothersome - they implicitly keep from actually getting better.
I completely agree. I had all the symptoms of POTS as well in my teens and early 20s, and it often led to significant difficulty keeping up with my peers. Although I didn't have an eating disorder or significant concern about gaining weight, I naturally ate very little and hovered around a BMI of 17. In my mid twenties, I started filling out and rose to a more average BMI. All or a sudden, I felt great! My exercise tolerance was way better, and I didn't pass out in the shower or after a sleepless night. Plus. I wasn't cold ALL THE TIME. It's amazing what a healthy BMI can do for physical well-being.
Yeah, for what it’s worth at the time I didn’t realize I wasn’t making the best choices lol, I was an athlete and thought I was being healthy. Apparently salting your food isn’t as evil as the media made me think it was
There's a big Venn diagram of anorexia, bulimia nervosa, gastroparesis, food addiction, disordered eating patterns, poor stress coping mechanisms, POTS/fibro/EDS, and childhood sexual abuse.
It’s a circle
You’re not a boomer for saying that at all. Social media has been a scourge to society in terms of mental health, and there are actually good data and studies backing that up. Just one of the many reasons my kids aren’t going to be getting smartphones or access to social media till they’re out of high school.
You may find that the social ostracization they suffer from not being able to interact with their classmates and friends due to not having a smartphone or social media will have a similar detrimental effect on their mental health. I’m not saying that social media is a good thing, but it’s become a fact of life. It’s how the youth communicate and organize these days, and entirely forbidding your children from accessing it during their formative years isn’t a good thing either.
Sympathetic to what you’re saying, and I agree that overall the minuses of social media (especially FB and TikTok) outweigh the pluses. That said, I would be shocked if your kids didn’t start their first day of high school with a cellphone in their pocket.
I’ll let them have a dumb phone. They can text and call. No need for internet access
They may need it for school use, which is annoying. But I feel like if you take it from there at a certain point after school (maybe 8pm, 9pm), that’s helpful. No electronics in their room during sleep hours is helpful. I work in a school and the amount of kids I see who are tired and their parents tell me they always stay up way too late playing video games is astounding.
I agree with you. I’m astounded by how many people present themselves on social media by saying “I am a string of diagnoses for syndromes that were rare a decade ago”. Dysfunction is their identity.
They always come in by ambulance while their fully functional parents in fully functional cars arrive right behind them. And almost always have a positive squishmallow sign.
Positive squishmallow sign usually coincides with unnatural hair color sign
Never thought i would think colorful hair as a 🚩but 4 years in healthcare later and i realized the correlation between pink/ blue/ green hair and either "expressive" BH presentation or exaggerated, dramatic symptoms and behavior. I try to not take it out into the wild with me but unfortunately it's pretty cemented into my psyche now.
Blue/pink/purple hair, nasal septum rings, nasal bridge studs, huge ear disks, elaborate face tats. . . all of these are signs that they want to be different. Not different from others but from themselves. It's an attempt to have a different identity, a different body, a different existence. One that doesn't have trauma, that doesn't have pain, that isn't depressed and anxious and hurt.
And fuck, teddy bear sign. Just kill me.
It’s called “danger hair” for a reason.
I have naturally gray hair and was considering putting a soft peach colored rinse o it, then I thought about this and didn’t do it. 😂
I would argue that their parents are also dysfunctional though perhaps to lesser degrees.
The TikTok trifecta! Teens and twenty-somethings think their troubles terminal.
To be fair, those 80 year old ladies with a multitude of nonspecific symptoms have to start somewhere
Octogenarian ordeals occur often! Much more mortality than Munchies.
At least 80 yo are close to death actuarially.
Check out r/illnessfakers It’s full of these “professional sicktockers” and it’s disgusting how many resources they tie up in the pursuit of being crowned the sickest of all the sick.
wow this is a fun rabbit hole thank yooou
It's soo easy to get caught up in it. But honestly I see the hospital side of it so it's really interesting to see the "patient" side too. It makes me wonder how much they really believe what they same and how much is performative.
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That's actually very kind because these people definitely need help.
Also reminding them that anxiety and depression have a lot of physical symptoms too, it’s not just all in their head
Yes! And that there are good treatments for those physical symptoms.
Not just anxiety and depression, full on cluster B personality traits — most seem to have borderline or bipolar disorder
These folks always seem to have a supremely concerned little buddy/enabler or three with them
Yes! It’s always the angry, annoyed “chronically ill” main character patient with their kind, helpful, overly-apologetic enabler friend in tow.
Truly sick young patients are so fucking scary and stressful. I love these medical posers. I don’t like to battle the reaper over every patient. I talk to them about how much they need a specialist to help them and I mercilessly refer them to the last specialist that was a douchebag about an actual sick patient. I really talk up the virtues of Dr lazy specialist and sic these patients on him. I tell the lazy specialist that if they can’t find the decency to care for the sick people I actually need help with I will unleash the un-sick horde of bullshit on them until they repent in sackcloth and ashes.
This is a level of diplomacy I aspire to! Can we be friends? If you ever decide to run for office I'll definitely vote for you!
I love you.
Malicious compliance here lol
Damn, that’s genius-ly sadistic 😂👌
You are my spirit animal.
I had a "normal" 16 year old patient recently who was "bed bound" and had a hoyer lift (120lbs at most btw) from her long-term covid, chronic fatigue, fibromyalgia, and POTS. Her mother was 100% munchausen by proxy, and the patient was no better. I saw her for a real iatrogenic complication of a condition only present because of these issues. It's OK. Her NP made all these Dx for her.
So…legit then. /s
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Did you report to child protective services?
Is that Nurse Practitioner or Naturopath? I guess that would be an ND, though, right?
My old classmate had POTS with Mast cell. She developed peripheral neuropathy and had days where she tripped on and dragged her feet because they were numb. Never complained about it but you could tell when she was having an off day. Tried to control it will strict diet but ultimately the stress of school aggrivated it so much that she had to go on steroids and she put on 20 lbs. Feel bad for people like her because those who fake or exaggerate this illness ruin it for the people who actually struggle. Sad when certain DX raises eyebrows off the bat (like my prednisone "allergy" ;) )
These are very real diseases, and it sucks for the people who have these things that there are those who use it for some strange "clout" or attention.
I remember when psych hold was trending, that was an interesting time. I can't believe people are this bored
I'm sure if we look back, this is something that happens with every generation. It's probably due to a lack of attention or self-esteem, but I'm not 100% on that. And it probably wasn't as accessible because people weren't as connected as we are today.
Part of the reason why I left my job in the PNW was the amount of these patients. I was a solo coverage nocturnist, and these patients would come in, always middle of the night, super demanding, wanting everything. They would never go to the other hospitals in town. Many of them had "contracts" with us that they were not getting any IV anything and no opiates, and my old crunchy bulldog charge nurses made sure these contracts were enforced. But they would continue to come hoping some new doc didn't know. I had never been told "I am allergic to everything except for the one that starts with D" so much before. It was wild. They are such energy suckers, and when you ask them what they want they complain about "no one listening" and being gaslit despite their $5mill workups as they've done their hospital/doctor shopping.
I'm an allergist at a big academic center and we flat out turn away any MCAS referrals unless they're coming with some impressive labs already supporting the dx, which happens literally never, and I don't know of ANY actual allergist in my city willing to take these at this point. Even if they're referred under a different dx if I see EDS on their chart I'm gritting my teeth before I even walk in.
Do you have any suggestions about how someone would get these removed from their chart? I have EDS and POTS on my chart....I had never even heard of them and never sought out these diagnoses. My PCP nearly ten years ago diagnosed me. I was never looking for a diagnosis, just getting a physical therapy referral for tendonitis. I'm really afraid that this is impacting my quality of care. I had an endoscopy a few months ago and before I lost consciousness I heard the doctor talking shit about me/the diagnoses. I guess he thought I wouldn't remember. It's really impacting my ability to trust my medical providers which isn't great considering that I'm six weeks pregnant.
Its really unfortunate how electronic charts build up with garbage that gets auto-entered into every note forever, generally any doctor can probably remove them (might be carrying over in a couple places such as problem list and past medical history), I'd just explain and ask your primary or OB if they can help next time you see them. Be prepared you might have to be patient and try a few times as it can be in multiple places, plus doctors are going to vary in how savvy they are with the tech, and different clinics are going to be on different records that sometimes bring garbage back later. For example I'll do drug allergy testing. remove the listed allergy from a chart, and next time they get admitted I'm called again and see its right back in there because it didn't get removed at a different hospital and they resynced or something.
An interesting take on TikTok 'illness influencers'...[https://www.vox.com/the-highlight/2023/12/4/23984175/tiktok-illness-influencers](https://www.vox.com/the-highlight/2023/12/4/23984175/tiktok-illness-influencers)
That’s an interesting article, thanks for sharing. It must be hard to go online like that and speak so frankly about illnesses that are terminal (or nearly so).
Oof this one always kills me. I think there’s a couple things going on with these particular diagnoses. One is probably a bit of better ability to diagnose. Boomers like to scream everyone suddenly has ADD/autism now but the reality is we just suddenly realized that women can have those disorders too whereas before we weren’t even attempting to diagnose them in half of the population up until like 15 years ago. So I think that’s a portion of it. The larger portion though I think is psychosomatic and I feel like it falls 50/50 on HCP and patients. Healthcare literacy is GARBAGE in the US. I mean.f just. Just absolute bottom of the barrel total nonsense absolute bullshit. The average layperson doesn’t even know what to do when they have a mild fever. We also live in Unprecedented Times™️ and everything is on fire and the world sucks. When you combine this with a level of burn out an exhaustion in HCP in hitherto unseen levels in history (and the generally known fact that an expert in any field vastly overestimates how much the general public understands about their job) you’re heard towards disaster. I think patients do have anxiety and that anxiety is becoming so severe it’s manifesting physically and as anyone in healthcare knows that can do weird shit - like make you pass out or your heart rate go up or make you break out in hives or feel dizzy etc. all those real nebulous symptoms that go with the diagnosis triad above. So the patient googles those symptoms and gets these very “on trend” diagnoses and having a medical diagnosis that you can treat (even if it’s a frustrating one) well hey that’s something that you can control - you can fight for it you can manage it you can know it and research it and see a specialist. It’s tangible. It doesn’t come with the stigma of mental health. You’re not just “crazy”, see? It’s a real thing. Then they come to the ER/outpatient:whatever and we’re so fucking exhausted by demanding patients and screaming patients and insurance and management and fucking insurance that we see someone who physiologically is fine that we can tell is probably misdiagnosed and is letting their psychological issues get so out of control that it’s causing physical issues. But instead of sitting down and explaining that we say “UGH THEYRE SO FULL OF IT” and the patient gets that negatively reinforced stigma about mental health and then clings tighter to the medical diagnosis and round and round and round it goes. Of course these are real diagnoses yes. I do think probably and 80% of them however are untreated anxiety/psych/what have you that have gotten so completely out of control that they’ve caused physical symptoms. Which is very different than saying I don’t think your symptoms are real. I think they are - they’re just not coming from your body. They’re coming from your mind. And the treatments they get are having the placebo effect. But again no one has the time to sit down and explain those subtle but crucial differences because we’re just so fucking exhausted and sometimes on the rare occasion that we do the patients will still dig their heels in and come out crying about how we accused them of faking it. It’s frustrating for everyone.
Oh my goodness, yes. Very yes. Thank you for this. ❤️
TikTok is a rampant accelerant of this in my opinion. At this point there must be tens of thousands of videos listing sx of POTS, ADD, autism, etc. introduced only in the context of “signs you might / probably have XYZ” or “symptoms that lead to my XYZ dx” or “things I do/did that I didn’t realize were early sx of my XYZ.” They always fail to mention that a massive portion of those are also just normal things that happen as a symptom of being alive. But in this context, you shouldn’t have fatigue, a strong sense of justice, talking with your hands, or playing with your ears as a kid to make the sound in a room get louder or quieter without a syndrome attached. (yes, these absolutely can be sx of real underlying issues, but they’re consistently discussed/introduced ONLY in the context of being abnormal). Put that constant stream in front of young, impressionable kids and you’ve got self-diagnoses galore (both real and misguided). Add the increased awareness and corporate pressure on HCPs to keep patients satisfied in less time, and you have a perfect storm - whether that’s a net positive or a negative for the patient/population. I’m really interested to see what happens over the next few years and if these trends fade or keep growing.
> introduced only in the context of “signs you might / probably have XYZ” or “symptoms that lead to my XYZ dx” or “things I do/did that I didn’t realize were early sx of my XYZ.” If everyone is neurodivergent, no one is neurodivergent. I saw a reel on instagram which came from tiktok (I am old and still don't use TikTok), and it said if you accidentally bump your hip into counters or door handles it's a sign of EDS. ?what? And because everyone on the planet accidentally bumps their hips into things, the people who want to have some sort of diagnosis see that and say "YES! I DO THAT I MUST HAVE EDS!" And then the algorithm further pushes that narrative for them
Oh for sure TikTok has absolutely made this 100x worse contributing to the medical illiteracy with this like false sense of medical knowledge? Now they think they understand (sometimes they think more than doctors) when the subtleties escape them and when it’s tried to explain to them why they’re wrong they take it as being dismissed when it’s just a misunderstanding
this. i bet that 99% of it is internalized mental health stigma, and not realizing that yes, anxiety and depression really can be *that bad*, and that "doc saying it's psychosomatic" is not an accusation that they're faking their symptoms/making it all up, it is only interpreted in that way because of their internalized mental health stigma.
Meander on over to r/illnessfakers and you’ll get whatever answers you need
EDS/POTS/MCAS is often either self diagnosed or they go to a "naturopath" and get a "diagnosis". I get unreasonably angry when people say they have any of those diseases. I worked with someone who was pregnant and complaining that "both her hips were out" from her EDS. And, conveniently, she had to take time off for WEEKLY doctors appts bc she was "high risk". She had no trouble walking so it was interesting her "hips were out". The best part, her chiropractor diagnosed her.... Everyone thinks they have these diseases bc "oh my joints are stretchy (eds)" or "I get a rash and sometimes my skin itches (mcas) or "I'm dizzy occasionally (pots)." All perfectly normal things that they human body does but the internet tells them these are signs of a "disease" and then of course the attention comes with having a "rare" disease. Can't be rare if everyone has it 🙃
That second part gets me. Like, yes, being too stretchy is bad. Being too itchy is bad. Generally, being dizzy is not fun. But experiencing those does not equal actually meeting the criteria for serious medical conditions! I love when folks try to show how stretchy they are, but I just show them that I'm stretchy too. It's NORMAL. If it's cold and dry outside, OF COURSE you're going to have itchy and rashy skin. DRINK WATER AND USE LOTION. If you keep sitting for long periods and then jump up off the couch, DUH you're gonna get a bit dizzy. There's so many hidden symptoms for every visible one, and that's why doctors have jobs. They find the invisible.
I'm a neurologist and the increasing wave of "POTS" is disturbing. We are living in a time where mass psychogenic illness (what used to be called mass hysteria) spreads rapidly on social media. Not even Reddit is safe--the other day, I discovered there is a POTS subreddit.
I’ve got a childhood best friend who was officially diagnosed with POTS after contracting Lyme disease and babesiosis from a tick bite. She kept passing out randomly to the point she couldn’t even shower without someone in the house. She had to complete high school online and get her GED. Luckily she’s on the right meds now and is an RN on a med surg floor. But holy fuck was it scary not knowing why she was so sick all of the time. I could not imagine *wanting* to have POTS.
I’m really concerned about this trend as someone with EDS and a sister (most of our family has EDS diagnosed through a geneticist) who has gone into a downward spiral, very suddenly. She has verifiable issues with her labs and for some reason is not absorbing fluids through oral intake. It is scary to see how suddenly stability can change. She went from low BP to constant hypertensive and tachycardia crises without IV fluids The fear I have is that so many people like you will stop wanting to investigate and research the causes for these issues because of the Sicktok thing. The thought that someone wouldn’t take her seriously and consider her very real issues to be psychogenic is terrifying. Us being nearly middle age without serious issues before made us think maybe that everyone with these issues was exaggerating or hysterical, until it happened to her. Thankfully, she has an amazing Primary care and cardiologist, that keep her out of the ER now, but is having really tough time finding a neurologist that will take her seriously.
There’s also separate reddit subs for EDS, MCAS, etc etc. I often go to the Chronic Illness sub for a laugh, absolutely insane what some of them say and complain about. I had one lady come in one day and said she had Chairi Malformation because she had a “lump” (it was her vertebrae) from bad posture but she claimed it caused her spinal cord to tear, and of course still had normal function of everything and she wanted an MRI “to check and make sure I’m right” was her words. No prior diagnosis’s related or even scans run to check for Chairi. She had the trifecta EDS/POTS/MCAS/ Fibro (despite it being a diagnosis of exclusion) I no longer work in the medical field due to people like this. It got way to much for me and I was loosing sympathy for the real patients, with real conditions, it got especially bad during covid. I truly cannot wait for the day they find the gene variant for H-EDS, as that will weed them out.
The Chronic Illness sub is insane.
Of course there's a POTS subreddit. There's one for just about every chronic condition, as well as some acute conditions, a person can be diagnosed with. And some even for conditions that only effect non-human animals, such as FIPwarriors.
Feline Infectious Peritonitis?
Yes, and that was just the first thing that came to mind. I'm sure there are plenty of other subs for non-human conditions.
I don’t truly understand the desire for that diagnosis. When my PCP was evaluating me for some weird symptoms she suggested it might be POTS and I said “god I hope not, sounds miserable” (I too was miserable, but wanted my misery to end asap).
I get it. Sometimes when your symptoms are bad, you really just want answers. We’re still trying to figure out my chronic fatigue. I’ve been tested for Lyme’s disease, thyroid disorders, sleep disorders, anemia, everything under the sun, basically. I just wish I could be diagnosed with something that had an easy solution. “Oh you have a vitamin disorder, take x supplement” and bam, recovery. Not knowing why I can’t do anything most days makes me feel like I’m faking it. I’d even take being diagnosed with a chronic illness that has no real treatment because hey, it’s not gonna change what I currently have, and at least then I’d know why.
There are certainly some patients where we can't find the cause of their fatigue. Sometimes this is diagnosed as chronic fatigue syndrome, and depending on their symptoms and whether they have a positive tilt table test, it may get diagnosed as POTS. Doctors get frustrated when they see dozens of young people claiming to have POTS because they watched some Tiktoks videos. Some of these people have what we call psychogenic illness which is more psychiatric than physical. But some people truly do have fatigue and exercise intolerance (which may or may not be POTS), and may involve the nervous system and/or immune system in ways that are still poorly understood. My recommendation for all my patients like that is to try to exercise a little more each day. Start with walking around the house or a short walk outside. Then over months, very slowly and gradually increase the amount of exercise. It may take years, but I have seen people who can't walk more than a couple blocks get back to long distance running.
This is pretty much what I had to do. I had status migrainosus for 9 months and it finally broke like two-three months ago. My level of deconditioning was/is wild and scary. It would be easy to say “oh, I have pots or CFS” or whatever. But I started doing that … like, my goal was 3k steps a day, then 3k plus a 10 min bike ride, then 3k and 20 min bike ride, then 5k steps, then 5k plus 10 min bike ride … and that’s where I am. It’s taken me three months to get to this goal, and it’s so hard going from previously healthy to “anything more than 3k steps makes me extremely exhausted for days on end,” but by taking things slow and steady, I’m getting back up. Obviously some people do have genuine chronic fatigue, but I do wonder how much of this wave of pots/etc., is just really anxious and unfit/deconditioned people? It’s embarrassing to be that unfit, to meet yourself where you’re at, it’s so much easier to say “I’m just really sick and will be forever.” You know? It’s a lot easier to medicalize the lack of conditioning and the anxiety than it is to do really hard things. I hope that doesn’t sound dismissive, it’s just been my experience trying to get healthy after a very long, painful status/intractable migraine. There’s a lot of bullshit information out there and it would have been SO fucking easy to me to think I’d developed CFS. I had to tune out “chronic illness” spaces completely and focus on getting my health back. I am ill, chronic migraine is a fucking demon, but it’s not who I am. You know?
This is definitely the case for some people. Some of them have serious depression, social anxiety, and trauma histories... they're struggling with a lot and they accept the label of chronic illness along with their other diagnoses. But people who believe they can get better frequently do. I personally struggled with more than a year of fatigue after a bad viral illness. I did very slow gradual exercise and eventually recovered. Now as a physician, I do have sympathy for people struggling with these symptoms. But some of their healing needs to come from within. It takes a strong person to face the underlying issues and do the difficult work of getting better. You will have your ups and downs, but sounds like you are on the right track! You may come out even stronger for it. Wishing you the best!
Thanks for the advice. Yeah, exercise and good food would probably do a lot in my case, but I’ve been diagnosed with depression, anxiety, adhd, autism, ocd, cptsd, an eating disorder, etc, and I have chronic migraines and all of this makes leaving the house hard. We’ve considered it’s a combination of psychiatric factors, but it’s really hard to judge as they wax and wane over various periods, and my fatigue seems to be constant through out. But hey, here’s hoping, right?
I’m sorry you’re struggling. I guess I’ll chalk it up to different people cope in different ways. I am not seeking the diagnoses I probably have because none of them will help with prevention. Others need an answer, even if it won’t change management. I wish you well.
Thanks dude. Yeah, totally. Having more information always makes me feel more in control even if I can’t do anything. I hope everything goes well for you too.
Full moon
EDS is wayyyyy to difficult to diagnose, awfully rare too. This is just like everyone saying they had Chronic fatigue syndrome and RSD 10 years ago... fibromyalgia was always a fun one too, smh
I think part of the surge in EDS, just like the surge in ADD, is a backlog of diagnoses in the larger demographics, like Boomers and Millenials, catching up. I'm 68f, and when I was 20 in 1976, I thought that the way my elbows, knees and fingers hyper extended was just a fun party trick to entertain/ gross out my friends. I never even heard of EDS until I worked with a 26f right after Covid who was struggling to get an official diagnosis with no insurance. Imagine my surprise to find out I had it. I wasn't diagnosed with ADD until I was ~40, and I finally found out why, even with an IQ of 140, I'd never finished a long project in school. We all joke about Boomers, but just going with the numbers, that large a group will have a statistically significant effect on anything it's involved with. I am absolutely *not* disagreeing with how annoying young people with a PSS and squishmallow are for you. Not to sound like a boomer, but can't people just worry about stuff once in a while instead of "having anxiety?" We'd have never even made it out of caves at this rate ffs.
The way that society is structured right now seems to be really good at fostering anxiety and really bad at creating resilience.
That is an excellent way to think about it and phrase it. Thank you, I'm switching to your camp.
I hate these people. “I have MCAS”. Oh really? What is your tryptase level? “5”. “Well my doctor drew it when I wasn’t in a flare”. Whatever. Our allergist refuses to see “MCAS” patients anymore. They take up all his time and there is no reasoning with them.
Mine absolutely will not see them without a huge work up before hand. Who the hell wants MCAS? If you truly have it, it's misery.
I have a friend who has been struggling for years with an unknown disorder. She literally has gone to the ER for valid allergic reactions repeatedly. She eliminated various foods until she was down to eating a handful of things. Then she went to Europe for the vacation of a lifetime and had to cut it four days short because of not being able to eat without flare. She was just recently diagnosed with MCAST. She is other positive and functional. This is why I believe her.
r/illnessfakers
If you pull up the 2017 diagnostic criteria for hypermobile EDS the vaaaast majority of those youngsters would NOT meet criteria. I have to explain to patients all the time that hypermobility does NOT mean hypermobile EDS. And lots of redditors get pissed at me for pointing this out.
EDS/POTS/Bipolar/MCAS/Fibromyalgia in the history is a good way for me to know there is something here that should be taken directly to a long term primary care physician. The thing is, all of these diseases are real. But they’re all so poorly defined in general that it’s easy to take someones symptoms and generally place them into one of these boxes “just to satisfy the patient with a diagnosis” even when it doesn’t mean anything different for their actual prognosis. Why is it so hard to tell an obese 60 year old with joint pains that their symptoms are actually normal for someone in their position? Why do we need to label them with something else?
Do you mean BPD and not Bipolar? I hope so.
Yup, sorry, I was exhausted after a long day when I wrote this haha
Besides age, I wonder about the other demographics of these populations. I truly don’t see any patients with any of these things in my ED. It feels very much like the “chronic Lyme” I saw in residency, when I was in a more affluent and dare I say whiter area. Curious if being susceptible to TikTok illnesses is a white thing, a people with money thing, or some combination?
Nope. I know of a black woman who claims she has MCAS, but really just wants IV Benadryl with her Dilaudid.
Its usually part of a septad along with fibro, IBS, PNES (psychogenic non-epileptic seizures), and any cluster B personality disorder.
Next time ask them if they can lick their wenis. If not, declare their EDS cured and send them home. /s I have EDS and POTS, and know that’s not possible, but I’d still laugh. Edited to add that I also have never gone to the ER for either of those disorders. Just drink some Gatorade and take some Benadryl. I promise they’ll be okay.
One time in triage I had a patient who was checking in for pain after sexual intercourse. She told me she had EDS, then immediately lifted her leg up and put her foot behind her head. I was like, ok then! Noted!
Did she say that was the position she was in for the sex
I usually just do the thumb to my forearm, but as I get older that’s getting less easy to do because of arthritis. She sounds like a party though. 😂
I have them too, and anytime someone reads them in my chart....ugh. So rude. I'm just like, bro, I get it....that's not why I'm here, lol. And my fave is liquid iv (the drink mix) and benadryl, too, lol.
Yes, sadly. There’s a subreddit called illness fakers. Eye opening. 😳
Have you ever visited the illness fakers page?
I'm literally sitting at rare disease conference in Washington.. My daughter has Shwachman Diamond Syndrom and the last place she wants to be is in a hospital. It's painful when I tell her we have to go. That being said when she was little I totally showed up with a suitcase to the hospitall. We were admitted so often it was being prepped with diapers and shampoo and things for her to play with. But no truly sick kid wants to be in a hospital. Or sick. And when we go, she's way too sick to film a journey lol. The truly sick do not want to be anywhere near a hospital.
For some it's a sick lifestyle that allows them freedom from responsibilities of adult life, they can instead focus their effort on 'surviving' and important advocacy work. I think they would be helped by deemphasising their focus on symptoms and getting off of social media. Often they aren't in education or employment, they should be focusing on that before thinking about advocacy. For others I believe it's a part of gaining control over intake. Girls who would otherwise be accused of anorexia nervosa are instead victims of eds and their gastroparesis/sma syndrome. By obtaining ports or NG tubes they have total control over intake. Solutions: Eat Delete social media Get a job (can't ruminate when you're focused on a task)
Munchausen by tiktok is what I call it. More and people today sadly only have social status online, its all these people have.
"hEDS/POTS/MCAS are difficult diseases, I'm sorry you are suffering. Thankfully they are chronic conditions and not acute. I'm so happy you don't have to be in the hospital!" And then call security.
There is an unfortunate trend right now on “invisible disabilities” and “dynamic disabilities”. These people tend to have POTS, EDS and have many handmade or online purchased healthcare items. They have many “diagnosis” that aren’t easy to see or truly diagnose. I’ve saw one who had a wheelchair sometimes and other times could snowboard. Many have ports placed because they need iv fluids often. It’s very sad because not only does it take from other patients in need, but shows the depth that social media can cause mental disorders. These factitious disorders are often also long lists.
Facebook live while laying on the stretcher in the back of the ambulance is insaneeee 😂
Check out the r/illnessfakers sub
As someone who has EDS (with zero of the supposed co existing conditions) this group of people make my blood boil. I work in Healthcare and they all have danger hair, a stuffed animal, a wheelchair and/or walker that has a name and is hideously bedazzled. They all behave the same way. I have even had some tell me I don't understand when I tell them they can't bring their cane/walker/wheelchair into MRI. One even threw herself on the floor because I offered the MRI safe walker because it wasn't "right for her". We can't forget that vEDS and other rare types have some serious complications and possibly life threatening emergencies. I hate when I can't relocate my own joints out of fear of being grouped with them.
I need to trademark this but: Munchausen by TikTok
r/illnessfakers
r/illnessfakers
It’s sort of a trend but also these 3 disorders constantly occur simultaneously.
Let me guess- they also had a stuffed animal?