Alex 
I understand there is a new diagnostic criteria and supporting literature for EDS and hypermobility coming December 1. I'm going to be seeking a diagnosis from my rheumatologist for hypermobility later this year. Is there any preliminary info available to show what the revised criteria and guidance will be? If so, maybe it'd make sense to wait, thinking it might be more inclusive than the 2017 criteria, as I'm otherwise unsure whether I will fit the current criteria enough for a diagnosis.
Kate HildenbrandMy colon is subluxing my ribs. Wonderful. Well, at least it isn't stuck between rib and hip anymore.
AaronI wonder if this might explain the link between Ehlers-Danlos Syndrome and neurodivergence. People with EDS, like myself, are 7 times as likely to be autistic and 5 times as likely to have ADHD -- also like myself. (There are other associations. These are just the two I know by memory.)
https://www.sciencedaily.com/releases/2026/03/260304184233.htm
Scientists discover a hidden force that helps wire the brain
Growing neurons rely on chemical cues to find their targets, but new research shows that the brain’s physical properties help shape those signals. Scientists discovered that tissue stiffness can trigger the production of guidance molecules through a force-sensing protein called Piezo1. This protein not only detects mechanical forces but also helps maintain the structure of brain tissue. The discovery reveals a powerful link between the brain’s physical environment and how its wiring is built.
November GrauSo we're still being fannied about by the skeevy bastards at Lysadis in Parigny, the place where Duffy bought a Tectro gas cylinder heater which failed to ignite properly and, after oozing a faint blue vapour from one panel, promptly fell on its face because one of the wheels has literally no thread, just a series of parallel unconnected grooves.
Between Xmas and New Year we took it back and the guy who looked at it, as I may have mentioned, was a massive wanker. He failed to put the wheel on himself and just kept asking us repeatedly if we'd "read the manual" (which sadly says nothing about how to magic a screw thread out of thin air, let alone anything about this particular ignition problem). So we complained some more, and then the woman at reception went "ok to give you a refund the accountant needs to sign off on it, she'll phone you next week in the New Year".
You can, of course, guess how that's worked out. Absolute radio silence. I phoned them yesterday for form's sake and the receptionist tried to feed me another bag of crap, this time claiming that they can't issue a refund before they themselves have got refunded by Tectro. Now this kind of sounds like horseshit to me, though I'd like to have it confirmed. (I do know that the official legal procedure (according to the Que Choisir consumers' association) involves sending a lettre de mise en cause requesting a replacement or repair of the product, which the vendor then has to respond to within 30 days before the customer can demand cancellation of the sale.)
But of course, even if there really is a need for the vendor to contact Tectro first to secure a refund themselves before they can give us one, they should have started this process with Tectro two weeks ago, when we showed up in the store with proof of the defects. And what is definitely horseshit is the woman's parting recommendation to "phone again on Monday" to see if the accountant is there.
We're not phoning again, we're going to show up in the store and I am going to talk at them, very slowly and patiently and just loud enough for any other customers to hear, for a Very. Long. Time. And this will involve a little chat about the disability element of the situation. You see, Duffy has no other valid source of heating in his room, and since this gas fire let us down, the chimney's also stopped working. So, as an Ehlers-Danlos sufferer with Reynaud's, he has developed the most ungodly chilblains on all his fingers, the worst I've ever seen on him, despite him wearing compression gloves etc. Lysadis know all this but they don't care.
So yeah, when, inevitably, Lysadis fuck us around again on Monday, this is all going on social media and especially their stupid fucking Facebook with its perky reminders of their recent participation in the Telethon. I'm sure a few pictures of Duffy's hands will go down nicely in that context. We both have a miserably small reach on social media but I am very pissed off and I will do my best to get the word out.
It's all been taking a toll on me though, all this going into battle for Duffy again. It's emotionally painful, because I'm not fighting for someone who loves or even likes me, so he can't offer any comfort to me as I go through these endless skirmishes. (We are talking a single muttered "thanks" after I wrote him the first official complaint letter to send to main office at Lysadis today. There's been nothing else throughout.) And it's always like that.
At the same time, I can't just let this drop because we still share a house and, on a purely selfish note, if he ends up being seriously incapacitated from the cold in this house, who's going to take me to my driving lessons or the supermarket? So I can't just leave it to him or nothing would get done.
I hate this situation so very much.
#ConsumerRights
#EhlersDanlos
#Disability
Between Xmas and New Year we took it back and the guy who looked at it, as I may have mentioned, was a massive wanker. He failed to put the wheel on himself and just kept asking us repeatedly if we'd "read the manual" (which sadly says nothing about how to magic a screw thread out of thin air, let alone anything about this particular ignition problem). So we complained some more, and then the woman at reception went "ok to give you a refund the accountant needs to sign off on it, she'll phone you next week in the New Year".
You can, of course, guess how that's worked out. Absolute radio silence. I phoned them yesterday for form's sake and the receptionist tried to feed me another bag of crap, this time claiming that they can't issue a refund before they themselves have got refunded by Tectro. Now this kind of sounds like horseshit to me, though I'd like to have it confirmed. (I do know that the official legal procedure (according to the Que Choisir consumers' association) involves sending a lettre de mise en cause requesting a replacement or repair of the product, which the vendor then has to respond to within 30 days before the customer can demand cancellation of the sale.)
But of course, even if there really is a need for the vendor to contact Tectro first to secure a refund themselves before they can give us one, they should have started this process with Tectro two weeks ago, when we showed up in the store with proof of the defects. And what is definitely horseshit is the woman's parting recommendation to "phone again on Monday" to see if the accountant is there.
We're not phoning again, we're going to show up in the store and I am going to talk at them, very slowly and patiently and just loud enough for any other customers to hear, for a Very. Long. Time. And this will involve a little chat about the disability element of the situation. You see, Duffy has no other valid source of heating in his room, and since this gas fire let us down, the chimney's also stopped working. So, as an Ehlers-Danlos sufferer with Reynaud's, he has developed the most ungodly chilblains on all his fingers, the worst I've ever seen on him, despite him wearing compression gloves etc. Lysadis know all this but they don't care.
So yeah, when, inevitably, Lysadis fuck us around again on Monday, this is all going on social media and especially their stupid fucking Facebook with its perky reminders of their recent participation in the Telethon. I'm sure a few pictures of Duffy's hands will go down nicely in that context. We both have a miserably small reach on social media but I am very pissed off and I will do my best to get the word out.
It's all been taking a toll on me though, all this going into battle for Duffy again. It's emotionally painful, because I'm not fighting for someone who loves or even likes me, so he can't offer any comfort to me as I go through these endless skirmishes. (We are talking a single muttered "thanks" after I wrote him the first official complaint letter to send to main office at Lysadis today. There's been nothing else throughout.) And it's always like that.
At the same time, I can't just let this drop because we still share a house and, on a purely selfish note, if he ends up being seriously incapacitated from the cold in this house, who's going to take me to my driving lessons or the supermarket? So I can't just leave it to him or nothing would get done.
I hate this situation so very much.
#ConsumerRights
#EhlersDanlos
#Disability
Maronno Winchester 
> @ChronicIllnessHumor 🔗 https://mastodon.social/users/ChronicIllnessHumor/statuses/115843049069958352
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#barometer #jointpain #jointhealth #rheumatoidarthritis #ehlersdanlos #chronicillnesshumor #chronicillnessmemes #autoimmune
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#barometer #jointpain #jointhealth #rheumatoidarthritis #ehlersdanlos #chronicillnesshumor #chronicillnessmemes #autoimmune
Bob K Mertz 
My body struggles to deal with a single full moon let alone 2 in a row
Pomegranate Pirate 🏳️🌈🏴☠️Still keeping an eye out for any other folks with creative support ideas for those with Ehlers Danlos.... Especially those with tech and engineering mad-scientist skills.
I'm the partner of one with #EDS that's getting bad.
#ehlersDanlos
W_Dräger 🦉Anyone have an office chair they can sit in for prolonged periods (ideally more than an hour)? Also open to non-conventional options. My current option really aggravates my lumbar pain. 
#hEDS #ehlersdanlos #hypermobility #disabled #disability #chronicillness #chronicpain
Court Cantrell does not complyI'm basically a hot mess, emphasis on hot and emphasis on mess.
Really wish somebody had helped me figure this out 30 years ago.
#EDS
#hEDS
#EhlersDanlos
#hypermobility
#BendyBody
#BendyGirl
#ChronicIllness
#ChronicPain
#bendy
#ouch
2/2
@ChronicIllnessHumor Doing dishes *always* hurts my back, often for days. It has since I was a kid. I didn't figure out that wasn't normal for decades. Likewise for realizing that feeling like you're going to pass out and being lethargic and unable to think clearly when you're standing for a long time isn't normal. It still slips my mind that this isn't the way the world works for most people.