Matthew Petri

[Matthew Petri @EDStype3Zebra]

@makdoongieJK So many times for me also.

[Matthew Petri @EDStype3Zebra]

@ameriguchi A guy in my building ask if I would mind if he prayed for me, I'm an atheist but said I don't mind, I wasn't expecting him to hold me in his and whisper into my ear for 2-3 minutes. He promised I wouldn't have any pain for a week or two.

[Matthew Petri @EDStype3Zebra]

@ehlersdanlosuk I was lucky, a nurse in the family had heard of EDS and my doctor actually listened and read-up on it. I started showing symptoms at 4 years old and was diagnosed at 5 years old (1995-1996).

[Matthew Petri @EDStype3Zebra]

So glad to be out of the city. #ehlersdanlos #chronicpain #painsomnia #dog

[Matthew Petri @EDStype3Zebra]

@TheEDSociety I think my aunt, who always had joint pain, got genetic tests done after I started having pain. I can't remember when I started dislocating, but by 7yrs old I would pop my fingers and shoulders back in without telling anyone... Because it was just a normal part of my life.

[Matthew Petri @EDStype3Zebra]

@TheEDSociety I don't remember the early pain, but I remember my mom saying something like, "Sorry I haven't told you sooner, but your joint pain is probably a medical problem that runs in my family, you're going to have to go to a bunch of different new doctors to be sure." (5yrs old 1996)

[The Ehlers-Danlos Society @TheEDSociety]

For Pain Awareness Month 2018, we asked our Ehlers-Danlos Society community: “What was your earliest memory of EDS/HSD-related pain? How old were you?” The response was overwhelming.

Read more at https://t.co/gPPZEi2MyQ

#myEDSHurts

[Matthew Petri @EDStype3Zebra]

My parents' chocolate lab puppy gets upset at me because I'm so bad at tug-of-war #ehlersdanlos

[Matthew Petri @EDStype3Zebra]

@EhlersDanlosgrl @HGMurgatroyd @SmartcrutchUK @SmartCrutchUSA My @SmartCrutchUSA came with stupid decals, but they came off easily. In my small apartment I've found them a bit cumbersome, but walking down the sidewalk they're great... Maybe a bit heavy...

[Princess, The Tower @APainPrincess]

“I do all these things with a smile on my face because I have no choice. The truth is, I watch you and wonder what it’s like to feel like that—to be able to do all these things without pain and #fatigue.” To Everyone Who Lives Pain-Free https://t.co/qAaBl3PKTz #ChronicPain

[Matthew Petri @EDStype3Zebra]

@ehlersdanlosuk I was going to type a long thing about how it's been 1.25 years since I've seen a doctor, but half way through my hand hurt so bad I deleted it all and closed the app. I just typed the same length of response that I originally wanted to type... Never said I was the brightest.#EDS

[Ehlers-Danlos Support UK @ehlersdanlosuk]

People with hEDS/HSD tend to learn how to manage most of their symptoms without recourse to medical professionals despite the significance of the impact of symptoms https://t.co/tdYBSn569T

[Princess, The Tower @APainPrincess]

“I’d much rather be at work. People look surprised when I tell them that, like I’m on some luxury vacation and they can’t understand why I would ‘choose reality’ over said vacation.” Secrets of People Who Can't Work Because of #ChronicIllness https://t.co/H5Ze0JM4ff #Disability

[Matthew Petri @EDStype3Zebra]

I'm calling it official. I've now gone two nights without being able to fall asleep for a single second. Hopefully I'll be able to take a nap at some point today, but I think the chances of that are slim to none. #Chronicpain #spoonie #ehlersdanlos #spondylolysis #painsomnia

[Matthew Petri @EDStype3Zebra]

@KaanaOnWheels I always wear clothes that are a size too big when I'm out and about, but when I'm home I rarely wear anything other than gym shorts and a loose fitting t-shirt.

[Princess, The Tower @APainPrincess]

“Over time we lose pain behaviors others expect to see. Because it is our ‘normal’.” We wear our pain on the inside https://t.co/VPDxLXQQsO @Nikki_Albert #chronicpain #invisibleillness

[SourceFedNERD @SourceFedNERD]

Are you at VidCon and want to hang with @SamBashor, @maudegarrett, and @fimo?? Check out the @NewRockstars News live show, TODAY, at 4pm, at the Filmora booth near the entrance of the convention floor! You can ask them questions and be in the show!
(Yes, I’m a ghost)

[Princess, The Tower @APainPrincess]

“There are many reasons I conceal #pain: habit, shame, feeling like I’m ’negative‘…a burden, being disbelieved, knowing people tend to either not know what to say or skate around the issue… Concealing pain is…easier.” https://t.co/AG6FZmuLo1 #EDS #invisibleillness #chronicpain

[Matthew Petri @EDStype3Zebra]

@TheEDSociety I don't think my gender makes a differance; I believe we all tend to say, "I'm fine" and "I'm doing okay" even when we're in absolute hell.