I mean I realize it sounds dickish but the reality is that they are sheltered wimps. They haven't suffered pain and hardship of the sort that gives perspective, and they spend their whole life avoiding the kind of aches and pains that it would behoove them to learn to ignore and work through. They don't need to go through bootcamp or anything but it would be healthy for them to just like, idk, have a really bad flu or pneumonia or go through natural childbirth or pass a kidney stone so they can figure out that subluxations are the hangnail of the musculoskelatal system and move the fuck on with their lives, preferably ambulating rather than seated on a Rascal.
It may have been discussed towards the beginning of this thread but I think the system for gauging the amount of pain a patient is in is flawed in this regard. I know it's 1-10 (or the smiley face ones) based on the most pain you've ever experienced but if you've never experienced childbirth or something similar it could legitimately be the most pain you've ever experienced.
Some doctors are quite good in asking what kinds of things the pain has prevented you from doing which I think is a good way to interpret what a patient means by a ?/10. I imagine a 10/10 involves a lot of screaming and crying though.
So yeah, your reply is pretty Dickish. It’s one thing to say, “This person’s shared history doesn’t match up with the type of pain they’re presenting with” and to lump in all people with EDS as cows who have never experienced pain and need to exercise to feel better.
The thing about people with TRUE genetics diagnosed EDS is that it is known that tissues are more fragile. Pain is perceived at a higher rate than normal because the place where joint pain perception occurs is a place that’s too mobile in people with EDS, especially Hypermobile type. So the brain thinks it is sensing a higher degree of injury than it actually is.
Add any other type of serious injury on top of EDS and you have a recipe for a severe chronic pain a Syndrome is not treated adequately and quickly. Example: joint injury in the spine may cause instability in the spine only within movement and may not show up on a supine MRI. So without a diagnosis, a proper standing extension and flex ion X-ray may not be ordered and that instability can set up intractable muscle spasm and joint slippage (Spondylolisthesis).
When those types of injury are present, opiate therapy MAY be warranted when all other treatment modalities have been tried for years. As patients age, their joints may become more and more unstable as injuries accumulate from doing general activity.
The biggest issue in this patient population is that they get injured easily from doing daily activities and then, they become anxious to do anything for fear of getting hurt. But, the injuries are going to happen regardless of whether they’re out enjoying life and doing activities or whether they’re at home watching Netflix. So, they must resist the urge to refrain from activity to avoid being hurt.
In general the picture you get from these people who claim EDS on instagram is not at all indicative of actual patients with EDS.
It may have been discussed towards the beginning of this thread but I think the system for gauging the amount of pain a patient is in is flawed in this regard. I know it's 1-10 (or the smiley face ones) based on the most pain you've ever experienced but if you've never experienced childbirth or something similar it could legitimately be the most pain you've ever experienced.
Some doctors are quite good in asking what kinds of things the pain has prevented you from doing which I think is a good way to interpret what a patient means by a ?/10. I imagine a 10/10 involves a lot of screaming and crying though.
Oh yeah the pain scale is ridiculous and near useless. I do like the ones that use examples a lot better. Like who cares how much "pain tolerance" you have, if you're a 9 or a 10, you're screaming or whimpering, blacking out, and not able to play on your phone or sit or walk normally. One time I was in the ER when they brought in a woman who had broken a couple vertebrae falling off a rock and she was conscious and screaming "I DON'T FUCKING CARE JUST MAKE IT STOP" to every one of their routine medical questions, I'd guess that's about an 8 or 9.
So yeah, your reply is pretty Dickish. It’s one thing to say, “This person’s shared history doesn’t match up with the type of pain they’re presenting with” and to lump in all people with EDS as cows who have never experienced pain and need to exercise to feel better.
The thing about people with TRUE genetics diagnosed EDS is that it is known that tissues are more fragile. Pain is perceived at a higher rate than normal because the place where joint pain perception occurs is a place that’s too mobile in people with EDS, especially Hypermobile type. So the brain thinks it is sensing a higher degree of injury than it actually is.
Add any other type of serious injury on top of EDS and you have a recipe for a severe chronic pain a Syndrome is not treated adequately and quickly. Example: joint injury in the spine may cause instability in the spine only within movement and may not show up on a supine MRI. So without a diagnosis, a proper standing extension and flex ion X-ray may not be ordered and that instability can set up intractable muscle spasm and joint slippage (Spondylolisthesis).
When those types of injury are present, opiate therapy MAY be warranted when all other treatment modalities have been tried for years. As patients age, their joints may become more and more unstable as injuries accumulate from doing general activity.
The biggest issue in this patient population is that they get injured easily from doing daily activities and then, they become anxious to do anything for fear of getting hurt. But, the injuries are going to happen regardless of whether they’re out enjoying life and doing activities or whether they’re at home watching Netflix. So, they must resist the urge to refrain from activity to avoid being hurt.
In general the picture you get from these people who claim EDS on instagram is not at all indicative of actual patients with EDS.
So yeah, your reply is pretty Dickish. It’s one thing to say, “This person’s shared history doesn’t match up with the type of pain they’re presenting with” and to lump in all people with EDS as cows who have never experienced pain and need to exercise to feel better.
The thing about people with TRUE genetics diagnosed EDS is that it is known that tissues are more fragile. Pain is perceived at a higher rate than normal because the place where joint pain perception occurs is a place that’s too mobile in people with EDS, especially Hypermobile type. So the brain thinks it is sensing a higher degree of injury than it actually is.
Add any other type of serious injury on top of EDS and you have a recipe for a severe chronic pain a Syndrome is not treated adequately and quickly. Example: joint injury in the spine may cause instability in the spine only within movement and may not show up on a supine MRI. So without a diagnosis, a proper standing extension and flex ion X-ray may not be ordered and that instability can set up intractable muscle spasm and joint slippage (Spondylolisthesis).
When those types of injury are present, opiate therapy MAY be warranted when all other treatment modalities have been tried for years. As patients age, their joints may become more and more unstable as injuries accumulate from doing general activity.
The biggest issue in this patient population is that they get injured easily from doing daily activities and then, they become anxious to do anything for fear of getting hurt. But, the injuries are going to happen regardless of whether they’re out enjoying life and doing activities or whether they’re at home watching Netflix. So, they must resist the urge to refrain from activity to avoid being hurt.
In general the picture you get from these people who claim EDS on instagram is not at all indicative of actual patients with EDS.
I'm not here to powerlevel. I don't care to share what kind of experience I do or do not have with any given level of pain or infirmity. I have been around long enough to see fads come and go, though, so I know what they look like. And a lot of airhead doctors and PTs are insanely in love with EDS right now, even as much as the spoonies are, or more. They are slinging that term around everywhere it will stick. A lot of people are stressed out and ache all over because life in this society is brutally fast paced and overwhelming. This week, those folks are getting told they have EDS. Humans are very receptive to suggestion, in general, and stressed out people even more so. We hear what you say and we rise to act out the part we are given. None of this can be fixed with opiates.
So, yes and no. Transdermal fentanyl is a lot harder to abuse (but not impossible) than other opiates to abuse. The dose, timing, and delivery make it that way, although addicts can find a way (not going into that here) But, if they’re on a decent monitoring system, it’s going to be caught quickly as the patient won’t have the correct amount of medication in their system.
The conversion rate for the lowest fentanyl patch (12.5) is the equivalent to 15-50mg oral morphine equivalency over 24 hours depending on the person’s metabolism. So, let’s say a patient takes (4) 5-10 mg hydrocodone per day, the fentanyl patch may be an appropriate answer for someone who has a consistent chronic pain injury that’s beyond more than the basic EDS type pains, or compounded by EDS.
But patients with EDS don’t tend to do well on fentanyl patch because of the issue with adhesives.
The most important thing is, is the patient on a stable, low enough dose? Are they increasing dosages frequently? Is the pain actually being relieved by opiates? Patients, regardless of causation of pain should have a dramatic functional improvement on opiates at the appropriate dose. They should also be relatively stable, without need for increase in doses for years at a time. Patient’s family should report that patient doesn’t have significant side effects like being drowsy, etc. Patients should be counseled that they need to stay on as low of a dose as they can to maintain as normal a life as possible; that their pain will never be completely gone, just lessened enough to regain quality of life. The ability to increase dose as they age/ gain tolerance is important. It is a GIANT red flag when patients keep reporting that opiates are helping but they’re still in pain and keep asking for dose increases within a year or two of time. It means that opiates aren’t probably actually working OR it means the patient needs a work up to determine what their liver enzyme genetics are like. Some patients may be rapid metabolizers or poor metabolizers, which affects which medication should be prescribed. That’s another reason to prescribe fentanyl, as opposed to other opiates. It is metabolized by wholly different liver enzymes than most opiates.
But it is BEST to avoid opiates except in acute distress for as long as possible in any disease.
Don't put words in other people's mouths by making up fake quotes for them.
Do I think EDS is a real condition? Yes. Do I also think that one specific EDS subtype--the only one with no conclusive genetic testing--has been massively overdiagnosed and selfdiagnosed? Also yes. I think gastroparesis is real too but there's clearly a lot of fakers of that on here.
Don't put words in other people's mouths by making up fake quotes for them.
Do I think EDS is a real condition? Yes. Do I also think that one specific EDS subtype--the only one with no conclusive genetic testing--has been massively overdiagnosed and selfdiagnosed? Also yes. I think gastroparesis is real too but there's clearly a lot of fakers of that on here.
Don't put words in other people's mouths by making up fake quotes for them.
Do I think EDS is a real condition? Yes. Do I also think that one specific EDS subtype--the only one with no conclusive genetic testing--has been massively overdiagnosed and selfdiagnosed? Also yes. I think gastroparesis is real too but there's clearly a lot of fakers of that on here.
Exactly this. Check out Table 1 in the link below. Notice how there is a "molecular classification" for every form of EDS except for hEDS. Which, huh, as coincidence may have it, is the one getting diagnosed all over the place, and the one that most of our opiate-taking friends are medicating.
IIRC the majority of street "heroin" overdoses come from the heroin being laced with fentanyl, which is way stronger and therefore gives a stronger high, but also causes overdose at lower amounts than heroin. Someone injecting heroin which is secretly laced with fentanyl might experience an amazing high and go back to the seller for more--or just die.
Because such a tiny amount of it is required for pain management and it can be easily manufactured, fentanyl is used in hospitals. It's about 100 times as strong as morphine (50 times as strong as heroin).
Fentanyl is qualitatively very different to heroin, and many many people have overdosed on it trying to get to the same approximate subjective state while not realising that will not happen, that a fentanyl high is much more subtle in many ways, despite still having the same effects as far as respiratory depression etc.
A drug being more potent means you need less of it. That's all.
Exactly this. Check out Table 1 in the link below. Notice how there is a "molecular classification" for every form of EDS except for hEDS. Which, huh, as coincidence may have it, is the one getting diagnosed all over the place, and the one that most of our opiate-taking friends are medicating.
Yup, hEDS is massively over diagnosed in the population that is seeing it out: Munchies, attention whores, ana chans, a few drug seekers, and many that are all of those rolled into one. Same for POTS, MCAS, and gastroparesis. I blame them much more than the medical professionals, these people (mostly young, white women) are going from provider to provider, lying about whatever they need to to get a diagnosis. And when they can’t get one, slapping it up on their IG bio is just as good.
EDS groups have managed to glob EDS, hEDS and totally pain and dislocation-free general joint hypermobility all under the EDS label so there's no telling what the hell EDS means anymore. It could be "I will be lucky to make it to age 40 before my organs rupture" or "I can bend my pinky backwards teehee."
It makes it easier for spoonies to get their EDS diagnosis and reduces visibility of serious shit like vascular EDS now that EDS is known as the fake bendy hand disease.
On Reddit, and I'm not talking IF, it can be anywhere on Reddit like a front page post of someone doing some contortionist shit, read the comments and you'll instantly see a whole group of people saying "Oh look they have EDS, they're going to have so much pain." Every Reddit post with anyone being flexible has part of the comment thread turning into an EDS support group.
It's because people from r/illnessfakers came here when that chick Jacque croaked and then came and are lurking in this thread when her thread got locked.
Fentanyl is qualitatively very different to heroin, and many many people have overdosed on it trying to get to the same approximate subjective state while not realising that will not happen, that a fentanyl high is much more subtle in many ways, despite still having the same effects as far as respiratory depression etc.
It's very rare for opiate addicts to actually abuse fentanyl as their drug of choice. Fentanyl patches were actually prescribed to people with a history of opiate addiction because it's difficult to ever get a rush out of them. It was generally assumed that the worst an addict might do was to wear more patches than they were prescribed or replace them sooner than they were supposed to. Neither of which is really that risky for someone who already has a pretty heavy opiate tolerance.
Of course what happened was that addicts would try to seek out the rush by switching up the route of administration, usually by eating the patches. The GI tract can absorb fentanyl from a patch about 30x faster compared to wearing one on your skin and patches could have up to three days worth of fentanyl in them so that never ended quite well.
I've seen kernels of this reaction in people with genuine chronic illness. It often starts as a frustration that they never get treatment other than "have you tried exercising?". So it's folks who genuinely have tried that, but are still eg. depressed and would like to try SSRIs. Similarly for people with joint problems who want to point out that exercise doesn't completely 'cure' them, even if it does help.
But then like you say, you get into the realm of the chronic illness warriors and that message seems to get completely twisted into ignoring all suggestions of exercise, PT, anything that might stop them deconditioning.
(For those with more experience or medical knowledge - am I right in guessing deconditioning is a pretty big deal even in young 20-somethings? I know in elderly people even a couple of weeks in bed can be the beginning of the end, it's wild to see such young people almost keen for that.)
If you haven’t heard yet, sadly Jaquie Beckwith (sister) has past away. Please give me time to write back to all of you.....YES, ALL OF YOU! Also give me tim...
youtu.be
Janjan's latest video. She's starting a vlog series on grieving for Jaquie.
She is so many levels of psycho at this point, I can't even . I've seen a handful of videos from other 'chronic illness warrior's about Jacquie but they were more or less in honour of rather than making a series on the munchies queen's demise and making it all about themselves.
If you haven’t heard yet, sadly Jaquie Beckwith (sister) has past away. Please give me time to write back to all of you.....YES, ALL OF YOU! Also give me tim...
youtu.be
Janjan's latest video. She's starting a vlog series on grieving for Jaquie.
She is so many levels of psycho at this point, I can't even . I've seen a handful of videos from other 'chronic illness warrior's about Jacquie but they were more or less in honour of rather than making a series on the munchies queen's demise and making it all about themselves.
Her eyes creep me out. I never realized just how DEAD they look. It makes sense that a person would have dead-eyes when they are feeling overwhelmed, but it made me realize that her eyes ALWAYS look like that. Like there's nothing behind there. Maybe she's just high all the time?
"Spoonielife Amanda" aka Jaquie's Skinwalker has provided me with this great rundown of shit that happened to her between when she claimed she was going to get treatment for her anxiety and stop exaggerating her health problems/seeking the most radical interventions until she started publicly updating her facebook again in April. It's like The Nothing never was!
Amanda Winig is a woman in her late 20s (27 or 28 iirc) from Nebraska who moved to Florida for the Disney World college program. This is an internship program where college kids can spend a semester or longer working for peanuts for the Disney parks in menial positions like food service and this is supposed to help them somehow. She ended up as a parking lot attendant, even though she was a social work student. After her term was done she was not invited for a permanent position but did not want to leave Florida so she briefly worked for Universal Studios until she was able to reapply to Disney independently and did get rehired as a parking lot attendant. After a year she got transferred to concierge at the Polynesian Village, one of their top-tier hotels. She was pretty fat (240 by her current calculations although previously claimed 190), posted nothing but food pics and Disney sperging, never mentioned anything to do with health.
Then one day she had a service dog in training. Or rather, she had a golden retriever puppy she bought from the same breeder Jaquie got Harlow from. She at first did not explain what this dog was for, but people commenting seemed to think it was a psychiatric dog, which makes sense because she has claimed to be in an abusive relationship and have panic attacks, anxiety, and PTSD since getting out of it. Fine, cool.
After she got the dog, she started dropping weight extremely quickly, like 40% of her body weight in seven months or something, and went on medical leave. She had to have teeth pulled because she vomited so much without taking proper precautions to neutralize the acid afterwards that she rotted them out of her head. Claimed the Jaquie Special, EDS/mast cell/POTS/GP, got a port, a GJ tube without ever having an NG or NJ, a wheelchair (same one as jaquie in a different colourway), an adjustable bed (same one as jaquie and bought like one day after Jaquie announced she bought one), had to be on Kate Farms right after Jaquie was on it, got the same harnesses and patches for her service dog that Jaquie had for Harlow, taught her all the same tricks including the famous Ranch Dressing/get me water trick, spoopy pro-ana shots, bragging about shopping in the kids' section. Typical munchie, although I don't recall any pill porn. Jaquie even set her up with her concierge doctors and visited her in the hospital during one of her sepsis stays and here it is:
she had to go on medical leave until disney could get her a wheelchair accessible check-in desk and accommodate her service dog. Then she had to go out on leave again over some disability access thing that may or may not have to do with her retiring Sadie early. She cried all over insta that there was one little minor thing that was keeping her from continuing to work there and then she almost immediately retired the dog. She's currently planning to go back to work but until then she's still going to the parks all the time.
When lolcow and later IF started laughing at her she chimped out about how she was nothing like Jaquie, then made a tearful post in IF about how she learned the error of her ways, she unfollowed all chronic illness accounts, locked down her insta and facebook, deleted her youtube, and stopped seeking media attention for being sick, but maintained that her disorders were really real, guys.
tl;dr:
She is 90 lbs after losing 150, although she previously claimed her top weight was 190 and she never looked 240.
Is on TPN.
Mast Cell Activation syndrome, must be in hospital for two weeks because anaphylaxis
Still scoots around in a wheelchair most of the time as her "muscles fail her" (yeah that's what happens when you starve yourself and don't walk)
Got a new service dog from a program she would not have qualified for when she got Sadie because they don't train psych dogs.
Port, saline infusions, all drugs IV
Got a gastric stim, site got infected, got sepsis, gastric stim removed. Worth noting that batshit insane EDS/GP munchie Raven Walden who was featured on Big Brother also had this exact same thing happen right around the same time.
Bought a $1200 hand cycle despite being unemployed for most of the last three years. Races in handcycle races intended for people who are actually disabled. You know, because when you're starving to death by your own claims, the best course of action is to train for a half marathon but do it so you don't blow your sickest little spoonie cover.
Shouts out another girl who works for disney, has a service dog, and competes in pushrim wheelchair races at Disney (except when she feels like racing on her working legs, that is). She has the munchie combo platter, has a hickman and later a port, gave herself sepsis more than once, signs herself out of hospital when she has a major infection because she wants to do a Disney race instead, IVIG (why do they all get fucking IVIG?!), had a previous service dog she retired with no warning and replaced even though he was a miracle dog who could alert to other people's diabetic crises without having been trained for it (of course, her random labrador she trained herself is a "natural alerter"). Not worth following/boring as all hell.
I hate all of these people yet I cannot stop watching them.
If you haven’t heard yet, sadly Jaquie Beckwith (sister) has past away. Please give me time to write back to all of you.....YES, ALL OF YOU! Also give me tim...
youtu.be
Janjan's latest video. She's starting a vlog series on grieving for Jaquie.
She is so many levels of psycho at this point, I can't even . I've seen a handful of videos from other 'chronic illness warrior's about Jacquie but they were more or less in honour of rather than making a series on the munchies queen's demise and making it all about themselves.
This girl has absolutely gone off the deep end. She's SWFing so hard. From what I can gather from Patreon, Judd told her (or her ball-less husband) to get lost and she pitched a fit because MUH GRIEF. She's high as fuck all the time. If she's not going to give us video of munchie queen Jaq's funeral, she needs to take her opiates and fuck off.
Her eyes creep me out. I never realized just how DEAD they look. It makes sense that a person would have dead-eyes when they are feeling overwhelmed, but it made me realize that her eyes ALWAYS look like that. Like there's nothing behind there. Maybe she's just high all the time?
I never paid much attention to Jan before, but I went and watched one of her “prerecorded” vlogs today. Holee Shit. She jumps around. Her edits are insane. And her eyes and personality. Just dead, you’re right. I guess she really wouldn’t have a following at all if it weren’t for Jaquie and her “spoonie” claims. She climbs the stairs and walks around like it is nothing. What is her claimed diagnosis that needs a fucking custom wheelchair?
. I've seen a handful of videos from other 'chronic illness warrior's about Jacquie but they were more or less in honour of rather than making a series on the munchies queen's demise and making it all about themselves.
