- Joined
- Apr 30, 2019
Don't forget Chronically Court, who says the Gardasil vaccine gave her EDS. She has her own thread here.
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Is Jan Jan no longer approved?
Shit was getting boring with no one posting Amanda/Ren’s latest antics. Apparently she has munchied her way to getting IV fluids and hopes she won’t need a port after one infusion.
My other personal favorite is Cassie @officialcassiemnolin.
The only thing she is official about is not being able to brush her own teeth, use her arms, or walk when it’s convenient for her. She gets her bitch husband to carry her around everywhere and she ain’t a small person even though she claims she can’t eat. She also recently munchied her way to a port and threw a “port party” for herself when she got it... complete with balloons and confetti like a 5 year old. I think her next goal is home oxygen for her vague “lung pains” and breathing issues, a service dog, and she’s hoping for a diagnosis of CCI.
This Dani person is amazing, she's kinda what you'd get if queen Sammie Bushart was into half-heartedly faking illnesses instead of half-heartedly faking pregnancies.
Sounds like you read a case report about EDS IV, the one with the exploding organs and yes, uterine rupture is a huge issue in that one. Type II and hEDS patients are usually fine, though at slightly elevated risk for preterm ROM and postpartum pelvic prolapse issues. There is nothing unusual or remarkable about a woman with one of those more common types of EDS having multiple normal term pregnancies.EDIT: sorry, Forgot to say this: Julian claims to have progressive demyelinating sensorimotor polyneuropathy.
then why does he repeatedly say "my nerve condition" these people seem to like to use specific terminology bc they like to seem mystifying. that is a bit weird.
I also find it quite curious that he claims his grandma is a zebra. https://www.instagram.com/p/Br5iVcvnD0e/ How many pregnancies did granny have ? Quite coincidentally I saw an article put out by a high risk OB hospital about them treating a woman with EDS during pregnancy and her baby being born full term and healthy. (I will see if I can find it.) Apparently she is a fairly healthy person in terms of her lifestyle, she works and is a productive member of society. But they emphasized how high risk the pregnancy was and went into some explanations why. So how is it if granny is a zebra her pregnancy was no biggy ? if not possibly multiple pregnancies.
it was more of a puff piece or feel good story for the hospital's foundation. it was not geared to an audience with a medical background. I can't find it now. but the hospital is one that would do a high percentage of the high risk pregnancies in the province. this was 2 yrs ago or so that I came across this but I looked up the mom's name on social media and I think the article listed her profession and it said she was an elementary teacher. could be remembering wrong. but I think she had a fairly typical job, and the article did not mention her having a whole other constellation of diseases.Sounds like you read a case report about EDS IV, the one with the exploding organs and yes, uterine rupture is a huge issue in that one. Type II and hEDS patients are usually fine, though at slightly elevated risk for preterm ROM and postpartum pelvic prolapse issues. There is nothing unusual or remarkable about a woman with one of those more common types of EDS having multiple normal term pregnancies.
Man at this point anyone who really for real has EDS is just completely screwed, aren't they? It's being overdiagnosed because doctors love a good wastebasket diagnosis, and patient advocacy groups are basically driving around and recruiting munchies off the street. People who actually have it are going to be marked as borderline personality fakers too even if they are just normal people with bad joints, pretty soon, as the other doctors get fed up with it all.
Yeah the University neurologists here have stopped taking POTS and most EDS patients probably because they are already overbooked af and most of these people end up not really having anything going on. It's unfortunate for the people who do have actual neuro issues who have been slapped with that set of labels either rightly or wrongly. But there must be such a flood of patients there's no other option but to cut it off at the source.it was more of a puff piece or feel good story for the hospital's foundation. it was not geared to an audience with a medical background. I can't find it now. but the hospital is one that would do a high percentage of the high risk pregnancies in the province. this was 2 yrs ago or so that I came across this but I looked up the mom's name on social media and I think the article listed her profession and it said she was an elementary teacher. could be remembering wrong. but I think she had a fairly typical job, and the article did not mention her having a whole other constellation of diseases.
edited to add - when I was trying to find the article I found a referral form for genetics at the same hospital and I found it interesting that the refuse to take referrals for " Adult assessment for Ehlers Danlos syndrome, hypermobility subtype "https://www.hamiltonhealthsciences....ferral-Form-Genetics-and-Metabolics-MCH-1.pdf
to me that says that they recognize that its a waste of the geneticists time and it is certain ppl who are getting there family doctors to make such referrals. which means these ppl prob get sent to rheumatologists in Canada. who blow them off more or less.
something I don't understand at all nor have I tried to look is why would someone with EDS tend to have a form of autonomic neuropathy like gastroparesis ? I don't see pathophysiological overlap.Yeah the University neurologists here have stopped taking POTS and most EDS patients probably because they are already overbooked af and most of these people end up not really having anything going on. It's unfortunate for the people who do have actual neuro issues who have been slapped with that set of labels either rightly or wrongly. But there must be such a flood of patients there's no other option but to cut it off at the source.
Short version is that there really isn't one. There are isolated reports in the literature and some over-eager people latched onto those and decided that gastroparesis must be happening because of POTS (which does cause stomach upset, but of the type that just has to do with circulation issues in general) and that everyone with EDS is secretly at risk for it. Like here's a weird case that's out there:something I don't understand at all nor have I tried to look is why would someone with EDS tend to have a form of autonomic neuropathy like gastroparesis ? I don't see pathophysiological overlap.
Thanks, for the link. so recovery it is even more rare than I thought if the leading expert on munchies took this woman to speak at a major conference.
The issue will always be doctors have to trust patients to tell them what’s wrong or what they are feeling to aid in many diagnoses. If a patient is determined to lie and fake symptoms it puts the doctor it totally negates much of the diagnosis criteria.
There are just a number of conditions that rely almost entirely on self reported symptoms, many diseases of exclusion, and those are the ones munchies love most. Some will go big though and aim for diagnoses that require more effort.
Some power leveling, but I feel it directly relates to this post. I shared my story on IF with having Factitious Disorder and how I’ve been in recovery from it after being confronted and undergoing years of intensive treatment. I follow these threads and contribute as I can because some of these people do the same things I used to do to manipulate tests, fool vitals machines, get admitted, etc and it’s so easy for me to spot. I now having much healthier coping mechanisms, but some of these people absolutely need to be confronted.
Edited to add that I would be happy to answer any questions. I’m not sure if this thread is the appropriate place, but just putting it out there.
Legit question... what was your end game or goal with the factitious disorder?
I always wonder why they perpetuate these lies? Does it fulfill something they feel is losing in their life?
And did you believe you were sick or did you realize you were faking or exaggerating?
taking certain things to throw off my bloodwork
unimaginable things to my body in order to be admitted and when it felt like physically I looked suspicious I would turn to psychiatric issues. All fabricated.
Wow. Could I ask you to expand on that?
Very interesting and thank you for sharing it, it can’t be easy to stop this kind of behaviour so kudos to you.
Can I ask a couple of questions?
what was the trigger for you stopping?
What kind of therapy have you had?
Do you have any permanent damage?
Do you have any psychiatric diagnosis’s now? Do you take any medication psychiatric or not?
What illnesses did you fake and what “unimaginable things” to your body did you do?
What does the “recovery” path look like? What kind of therapy? Are you still depenant on your parents?
Were you actively on social media with the faking?
I know a lot of the people we discuss read here, so I don’t want to go in to specifics, but I found OTC supplements that drastically drop your potassium and I would take a bunch of those 3. From taking so many supplements my metabolism is a bit screwed up, but mostly those same supplements destroyed my intestines and I now live with an , ostomy which I was thrilled about at the time, but despise now.
I am diagnosed with OCD and all my providers know I have a history of Anorexia and Factitious Disorder. I take Prozac, which has been very helpful with the OCD and urges.
I don’t want to give the people whom we discuss here too many ideas
I always have to be aware of urges that crop up, but I now have a real life and strong skills to help me cope.