Ehlers Danlos. What is it, It's Impact, Who Has It, and Who's Lying - Is it even real?

[PittyKitty]

Almost all of the chronic illness lolcows at one point or another. This thread started from reading people debate dumb shit about EDS in the muchausen's by internet thread.

So i understand you are diagnosed with it too. Can i ask which one? It seems already this thread is more like a discussion between 2 of us, might as well tmi (we can go into private conversation if you want). I never met anyone else with it, or anyone who d know about it irl (but as antisocial as i am its not surprising).

How was your childhood? Any mental issues? Any (more) problems right now as you get older?

 

[autoerotic bus accident]

It's absolutely real, and it seems like whatever that causes the mutations may be on the rise rather than just diagnostic awareness. But it is definitely something a lot of internet munchies gravitate towards, probably due to the variance in symptoms and lack of testing. It is easy to pretend since the apparently most common type doesn't have the faulty gene or genes identified yet, and because one of the symptoms is "double jointedness" which is something MANY young women experience as a normal body feature because female hormones increase joint laxity (without actually having EDS or any negative symptoms). This population is coincidentally the most likely to fake diseases for attention, so it's no wonder EDS cosplay became popular in this demographic. I have hope this brand of fakery may die down once the gene is identified, and there are many trials right now.

EDS is really prevalent in families in some areas and clinical practices, and people with it really tend to have some commonalities in their appearances even beyond the hypermobility (tall, marfanoid, flat feet, etc) so the high number of fakers with zero of these characteristics and zero family history tend to be fairly obvious.

 

[TheBigZee]

So i understand you are diagnosed with it too. Can i ask which one? It seems already this thread is more like a discussion between 2 of us, might as well tmi (we can go into private conversation if you want). I never met anyone else with it, or anyone who d know about it irl (but as antisocial as i am its not surprising).

How was your childhood? Any mental issues? Any (more) problems right now as you get older?

I can't talk about the CTD and MI directly, and I can't give a lot of details - even if we go private the site could get hacked, or the whole DB could wind up in court records. You can very easily deanonymize me in the CMS data-sets. Medicare makes it's claims info public, but they try to scramble things to make them harder to connect up.

Childhood I was floppy at birth, I couldn't move my eyes together correctly. My mom said the pediatrician said he didn't know what was wrong with me, but thought I'd grow out of it. I made motor milestones late (sitting, crawling, walking). I had a lisp. I developed galloping myopia. I got tons of stitches, and you can still see the scars over my body - they grew with me. I had extreme difficulty learning how to write properly, and I had a learning disability related to math and visual processing. My esophegus is biderectional (burping brings stuff up), I've always had dysphagia (need water to swallow dry, hard foods). I had severe headaches (common), and I remember getting CT-scans and seeing a ton of doctors. When I was five my broke as fuck parents got me a nintendo and took me to the library as much as I wanted so I'd be sedentary and not get stitches. They were worried about what happened to your parents with social services.

Socially I was bullied and excluded for several reasons. I think firstly my dad had aspergers and I did not learn proper socialization from him. I was awkward on the playground, chosen last, etc. I had the visual processing difficulty and I don't think I picked up I was pissing off/annoying the other kids. My parents were hs grads with thick country accents and the district put me in a talented and gifted program (despite knowing I had a learning disability for math) with a bunch of kids whose parents were college educated middle and upper middle class. I sat in the corner and read.

Wound up with major self esteem issues.

Mental health wise I take 300-800mg seroquel depending on how I'm doing, lamictal, and prozac, which tells you more than the diagnosis.

Adult health wise - I've got svt, get bouts of hypertensive urgency (unknown why). I've got an issue focusing one eye (dunno why). The eds was minimal until I had debilitating pain, followed by widespread neurological problems (parathesia, clumsiness). The details of the spinal disease would de-anonymize me. Many, many levels with either moderate-severe neuroforminal stenosis or moderate central canal stenosis, or both. I'm in the middle of a series of decompressions (some with fusions). Before they started I couldn't take care of myself, and now even though the pain is disabling sometimes I can at least keep my place clean. I'm about to do the last major surgery this summer (s1-l4 fusion), and then I'm probably going to need a pain pump or spinal stimulator to keep from having long bouts of disabling pain. After this it's all laminectomies or micro-discectomies if I elect to do them.

edit: I'm between 35 and 42 years in age.

 

[PittyKitty]

I can't talk about the CTD and MI directly, and I can't give a lot of details - even if we go private the site could get hacked, or the whole DB could wind up in court records. You can very easily deanonymize me in the CMS data-sets. Medicare makes it's claims info public, but they try to scramble things to make them harder to connect up.

Childhood I was floppy at birth, I couldn't move my eyes together correctly. My mom said the pediatrician said he didn't know what was wrong with me, but thought I'd grow out of it. I made motor milestones late (sitting, crawling, walking). I had a lisp. I developed galloping myopia. I got tons of stitches, and you can still see the scars over my body - they grew with me. I had extreme difficulty learning how to write properly, and I had a learning disability related to math and visual processing. My esophegus is biderectional (burping brings stuff up), I've always had dysphagia (need water to swallow dry, hard foods). I had severe headaches (common), and I remember getting CT-scans and seeing a ton of doctors. When I was five my broke as fuck parents got me a nintendo and took me to the library as much as I wanted so I'd be sedentary and not get stitches. They were worried about what happened to your parents with social services.

Socially I was bullied and excluded for several reasons. I think firstly my dad had aspergers and I did not learn proper socialization from him. I was awkward on the playground, chosen last, etc. I had the visual processing difficulty and I don't think I picked up I was pissing off/annoying the other kids. My parents were hs grads with thick country accents and the district put me in a talented and gifted program (despite knowing I had a learning disability for math) with a bunch of kids whose parents were college educated middle and upper middle class. I sat in the corner and read.

Wound up with major self esteem issues.

Mental health wise I take 300-800mg seroquel depending on how I'm doing, lamictal, and prozac, which tells you more than the diagnosis.

Adult health wise - I've got svt, get bouts of hypertensive urgency (unknown why). I've got an issue focusing one eye (dunno why). The eds was minimal until I had debilitating pain, followed by widespread neurological problems (parathesia, clumsiness). The details of the spinal disease would de-anonymize me. Many, many levels with either moderate-severe neuroforminal stenosis or moderate central canal stenosis, or both. I'm in the middle of a series of decompressions (some with fusions). Before they started I couldn't take care of myself, and now even though the pain is disabling sometimes I can at least keep my place clean. I'm about to do the last major surgery this summer (s1-l4 fusion), and then I'm probably going to need a pain pump or spinal stimulator to keep from having long bouts of disabling pain. After this it's all laminectomies or micro-discectomies if I elect to do them.

edit: I'm between 35 and 42 years in age.

Oh my god. I'm so sorry to hear this. Yours seems like much much worse than mine ever been. Mine is mostly a miriad of "small" things that i try to fix before they go into total shit.

I have always been having weak teeth (like everything else) , so dentist almost every 3 months (during covid privately because ofc they were only afraid of virus when working on our NHS) and yet few days ago one of my tooth just broke (without any reason, not that i have bitten anything) and split into halves right up to the roof. Now i need a surgery to remove broken root out of my jaw bone. Isn't this lovely? So its shit like that happening now and than and i try to fix it in a vain effort to keep health fairly ok before it goes to full shit.

But comparing to you i see i have it much better. I hope yoir surgery goes well. You don't need to answer this question, but how do you see your life span? Im around 35-40 and i see how soon those minor problems can very fast turn into major problems. I don't really see myself past 50-55+ (at least no worries about retirement plan). I think that will probably be my heart that gives up (irregular beats, pauses, valve doesn't close up properly, weak blood flow-always blue hands and feet as if blood didn't really move fast enough to keep it warm).

Also despite having NHS anything needs to be done privately here as queues are insane, so a huge chunk of my paycheck goes into healthcare and medications. Do you at least have good healthcare where ever you live?

 

[TheBigZee]

Oh my god. I'm so sorry to hear this. Yours seems like much much worse than mine ever been. Mine is mostly a miriad of "small" things that i try to fix before they go into total shit.

I have always been having weak teeth (like everything else) , so dentist almost every 3 months (during covid privately because ofc they were only afraid of virus when working on our NHS) and yet few days ago one of my tooth just broke (without any reason, not that i have bitten anything) and split into halves right up to the roof. Now i need a surgery to remove broken root out of my jaw bone. Isn't this lovely? So its shit like that happening now and than and i try to fix it in a vain effort to keep health fairly ok before it goes to full shit.

But comparing to you i see i have it much better. I hope yoir surgery goes well. You don't need to answer this question, but how do you see your life span? Im around 35-40 and i see how soon those minor problems can very fast turn into major problems. I don't really see myself past 50-55+ (at least no worries about retirement plan). I think that will probably be my heart that gives up (irregular beats, pauses, valve doesn't close up properly, weak blood flow-always blue hands and feet as if blood didn't really move fast enough to keep it warm).

Also despite having NHS anything needs to be done privately here as queues are insane, so a huge chunk of my paycheck goes into healthcare and medications. Do you at least have good healthcare where ever you live?

I don't think anything I have will substantially shorten my life, so I'll peg it at 70+ unless something unrelated comes up.

I have medicare so I can get the healthcare I need. It's a public insurance program for people over 65, or with disabilities. The hospitals write off my portion of the bills under a program called disproportionate share.

 

[Otterly]

EDS is real, yes. There are several ‘versions’ of it and some can be very severe. There are genetic tests available for the more severe forms. The issue is that there is this whole range of forms and some are extremely serious and life limiting, while some are much less serious.
Now onto our munchies who claim EDS while having none of the severe symptom markers (v flexible skin, deformity, vascular issues etc.) most are latching into a diagnosis that can’t be disproven because there aren’t really tests that are definitive for the milder forms. Complicating that is the fact that womens connective tissue is more variable in strength/integrity than men (no I don’t have a source, this is what conversations with rheumatologist consults have shown me.) the rheumatologist I know thinks that women also have a hormonal component to such variability, as she sees women who have experienced a lot of joint laxity during pregnancy and either never recovered or only partially recovered.
Anyway. EDS is real, the severe forms are awful, and the less severe forms are annoying and not ‘disprovable’ which is why munchies love it.
ETA: munchie comments not directed at posters above. EDs is real, I’m talking about the perfectly alright girls in the munchies threads with the fullly deck out wheelchairs who magically recover for fun events

 

[behindyourightnow]

People on this forum don’t know much about hEDS and some of them don’t want to admit that it’s real because then they would have to mentally face the fact that they were making fun of some “munchie” lolcows who did not deserve it, aka they were wrong and being shitty.

hEDS is sometimes so obvious that you can tell if someone has it at a glance (note: by “you” I mean a random observer, not a doctor giving an actual diagnosis, who should obviously look deeper).

There’s just… a look. Uneven skin tone/blotchiness, excessive skin wrinkling around the joints, types of visible scars, often a doughy look to the skin overall. All that before you even get to the joint hyperextension and general body type.

“Kindness” in the lolcows forum is a good example of the skin appearance I am talking about:



But there were still a bunch of people in the sideshows thread calling her a munchie. She’s a genuine lolcow who has BPD, but the hEDS is real.

 

[TheBigZee]

People on this forum don’t know much about hEDS and some of them don’t want to admit that it’s real because then they would have to mentally face the fact that they were making fun of some “munchie” lolcows who did not deserve it, aka they were wrong and being shitty.

hEDS is sometimes so obvious that you can tell if someone has it at a glance (note: by “you” I mean a random observer, not a doctor giving an actual diagnosis, who should obviously look deeper).

There’s just… a look. Uneven skin tone/blotchiness, excessive skin wrinkling around the joints, types of visible scars, often a doughy look to the skin overall. All that before you even get to the joint hyperextension and general body type.

“Kindness” in the lolcows forum is a good example of the skin appearance I am talking about:

View attachment 3350893

But there were still a bunch of people in the sideshows thread calling her a munchie. She’s a genuine lolcow who has BPD, but the hEDS is real.

She could have hEDS for real, but still "use" it in a toxic way because of her BPD. I've seen some of that in real life - young women who have hEDS but also badly need a therapist and psychiatrist.

 

[Grey B. Train]

I've been burned on KF before, so I don't want to go into details. But I'm supremely loving that a lot of these collagen mutations are finally getting reviewed and studied. I wish munchies didn't cloud the water and screw things up for others. Also, as of 2019 at least, (private US) insurance will cover the invitae test if there are enough concerning criteria (even without beighton) like a aneurysm rupture before age 40.

 

[grimacefetishist]

Women think they have it because they end up with unstable joints, but the doctors they see are legally unable to easily say "that's just a woman problem."

Truth of the matter is that it is, but it can come across so horribly wrong to the patient that it just can't be brought up at all.

 

[ZsaZsaBinks]

Necro:

I believe cEDS and vEDS exist, as genes for them have been found. But hEDS hasn’t had a single gene found for it, and seeing that most cases are mentally ill women and not people of all types (like autosomal dominant disorders are), I feel like hEDS isn’t legitimate. When do you hear about men having hEDS? It’s always the same sad woman who claims to have hEDS.

 

[Richard_Wetpasta]

I've known one woman I believed likely had hEDS. I believed it because her ribs would pop out of the connective joints in her spine and she was routinely in the hospital for it. But I think that's an extreme case, and I wouldn't be shocked if there are larpers.

 

[TheBigZee]

I believe cEDS and vEDS exist, as genes for them have been found. But hEDS hasn’t had a single gene found for it, and seeing that most cases are mentally ill women and not people of all types (like autosomal dominant disorders are), I feel like hEDS isn’t legitimate. When do you hear about men having hEDS? It’s always the same sad woman who claims to have hEDS.

Estrogen vs Testosterone in puberty makes a big difference. Boys grow out of many of their problems as their muscle tone increases. Women's tendons and ligaments loosen when their estrogen goes up - woman athletes are much more likely to sustain major tendon injury during this.

As far as the mentally ill women - it's like the tik tok tiks (beans). Most people living with it have better things to do than share their lives and sit in support groups all day long. You wind up with fakers emulating fakers experience (hEDS, POTS, MCAS), and they all emulate each other.

hEDS by itself isn't really that interesting. A tendency to subluxate/dislocate just means random bouts of extreme pain intermixed with an otherwise normal life. It's why the fakers had to keep adding things to it.

 

[ZsaZsaBinks]

Estrogen vs Testosterone in puberty makes a big difference. Boys grow out of many of their problems as their muscle tone increases. Women's tendons and ligaments loosen when their estrogen goes up - woman athletes are much more likely to sustain major tendon injury during this.

As far as the mentally ill women - it's like the tik tok tiks (beans). Most people living with it have better things to do than share their lives and sit in support groups all day long. You wind up with fakers emulating fakers experience (hEDS, POTS, MCAS), and they all emulate each other.

hEDS by itself isn't really that interesting. A tendency to subluxate/dislocate just means random bouts of extreme pain intermixed with an otherwise normal life. It's why the fakers had to keep adding things to it.

So it just sounds like the loose joints that women naturally have due to estrogen, and not a terrible genetic disorder with all those other diseases added to it.

I hate how the fakers manipulate people into thinking that something is seriously wrong with them.

 

[TheBigZee]

So it just sounds like the loose joints that women naturally have due to estrogen, and not a terrible genetic disorder with all those other diseases added to it.

Kinda. It can become a very painful condition due to early onset disc disease/osteoarthritis and repeated joint injury. Pre-internet you didn't see 20 year olds in wheel chairs though.