As tee, hoodie, pin, sticker, magnet, or mug
https://www.etsy.com/shop/ChronicIllnessTees?search_query=hope
As tee, hoodie, pin, sticker, magnet, or mug
https://www.etsy.com/shop/ChronicIllnessTees?search_query=hope
It's crazy how much of an overlap there is between AuDHD and EDS. There are so many "autistic zebras" out there!
How do you know if you've popped a rib "out of socket"?
I sneezed this morning and thought I pulled a muscle, but the pain is intense and hasn't let up all day. I started to wonder if it was something more when I sneezed again this evening, and there was a very clear popping sensation accompanied by even more intense pain. It's right around the area where my rib would meet the cartilage next to my sternum.
I've been unable to cough effectively all day long. Every cough, even a mild one, is super painful. Meanwhile, I feel like I'm suffocating or drowning because I can't clear my airway effectively.
If it is a dislocated rib, what do I do? How do I fix it or at least get the pain to ease up? How do I stop this from happening again?
#EhlersDanlos
#EhlersDanlosSyndrome
#EDS
#dislocation
#ChestPain
@eds
#eds anyone else unable to have kt tape on their skin, after about five hours my skin starts burning and I have to moisturise it off otherwise it tears skin does anyone have a solution my shoulder need support
> a painfully stiff neck such that I couldn’t check my blind spot when driving
Until just now, I thought this was a normal, regular occurrence for everyone.
#EhlersDanlos #hypermobility #GeneticDisorders
Excerpt: "As someone diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) recently, I was intrigued to discover Francesca dePasquale's Hypermobile Musician, a resource aimed at educating and supporting teachers and musicians about hypermobility. I spoke with Francesca about her experiences and the importance of raising awareness around hypermobility in the music industry. Read the full interview below."
About 8–10 years ago, my #EhlersDanlos doctor (Dr F) told me to take up #pilates (starting with private lessons so the instructor can ensure good form since the EDS makes me more injury-prone). She said #yoga would be acceptable too (NOT hot yoga!!!), but Pilates would be safer.
In April, I was taking a #tango lesson with Germán Filipeli, and he said I needed more core strength to do volcadas and should take up Pilates.
Weak stabilizer muscles are manifesting knee pain, so I finally started.
@hadon Yeah, h in hEDS is for hypermobile.
Back when I was on Twitter, I was actually mutuals with several EDS researchers, including the one who found the link between EDS and neurodivergence. Her study showed the chances of ASD for people with EDS is 7 times what it is for non-EDS folks, and a 5 times the base rate for ADHD.
#ADHD
#autism
#AuDHD
#EDS
#EhlersDanlos
#ActuallyAutistic
#AutisticZebra
@hadon The issue isn't weak muscles, but fluid and tickle in my airway. If anything, people comment that my cough can be scary loud because there's so much force behind it.
Funny that you should mention strengthening abs, though. I was born with a congenital hernia above my belly button. Basically, a hole in the connective tissue where my abs were knit together. My parents made me do sit-ups as a very young child to strengthen the surrounding muscles extra, on the doctor's advice, to give additional support in that region. It's apparently a common thing for Ehlers Danlos.
I'm a bit weird in that I don't have the general weak muscle tone that is common for EDS. If anything, it's the opposite. I'm more muscled than I have any right to be, given my sedentary lifestyle. I also have never broken a bone. But I have all kinds of other traits that line up closely, including the diagnostic criteria. I think I have a weird, unrecognized variant.
Anyone who has POTS -- have you ever had a situation where you weren't feeling well and that corresponded with *lower* than normal heart rate? My typical is around 80bpm resting. Currently while laying down I'm around 65bpm which is lower than I think I've ever seen my body sustain for a while. I don't know the reason for this low heart rate.
It's the people who've been there before who are still here. The people who still offer a call after I've canceled 100 times, the people who do nothing with me for an entire afternoon without judgement, the people who always thought I was worth it.
For the rest, I'm now fixed, get to start over the fight.
3/3
Even after decades of knowing, I forget how much a mast cell/allergic reaction degrades my mood and mental state until well into the depression. #depression #mastcell #ehlersdanlos
A friendly reminder to anyone who has Ehlers-Danlos or has joint hypermobility (aka "double-jointed"):
*****
Avoid the antibiotic Cipro like the plague.
*****
It can destroy your body. It weakens tendons and ligaments and makes them susceptible to abruptly bursting or snapping. The effects of the drug can be long-term. My brother took it and had to have major surgery to have a tendon reattached in his thumb. His story isn't nearly as horrible as others I have heard.
#EhlersDanlos
#EDS
#cipro
#joints
#hypermobility
#DoubleJointed
#antibiotics
#MedicalHorror
Hola Titánicos, cada 15 de mayo se celebra el Síndrome de Ehlers-Danlos, una enfermedad rara caracterizada por articulaciones extremadamente laxas, piel muy elástica y vasos sanguíneos que se dañan fácilmente.
https://somosdisca.es/dia-mundial-del-sindrome-de-ehlers-danlos-2025/
@melindrea I got reprimanded so many times in school for not sitting "right" in my desk. I didn't learn till many years later that it's not normal for furniture to *hurt* you when you use it as intended, and that maybe there was more going on for me. I'm guessing all those teachers who "corrected" me still haven't learned that.
Today is the 1st of May, which means it's the start of Ehlers Danlos Syndrome and Hypermobile Spectrum Disorder Awareness Month!
Hello and solidarity to all of my zebra siblings