When you meet a new GP & they want to help! Great feeling despite still being sick everyday. Blood test, new anti-sickness drug & x-ray booked for Monday. Back to see her next Weds, hope she doesn't admit me for dehydration #EhlersDanlosSyndrome #EhlersDanlosSucks #gastroparesis

Ok...I don't smile every time because it kinda hurts. #EhlersDanlosSyndrome. #EhlersDanlosSucks.

Oh! Damn I have over done the walking the past couple of days! My legs are so Painful & Week I can barley walk! :'( #EhlersDanlosSucks

I just took a fall. That's so saddening for me. I'm a bit worried for the future. I lost my balance and fell. I lean to the left, and I got up...and went left. And kept going left. *sighs* #EhlersDanlosSucks

Twitter is so addictive, it took a migraine & my right arm hurting to log off! #EhlersDanlossucks

Today, I feel like exercising. Finally, my body and EDS have decided to co-operate. #ehlersdanlossucks!

Is there a hotline in which you can call and just complain about your hip being out? 😧 #ehlersdanlossucks

@SaveSamantha_ #whensomeoneaskswhatdoesEDSstandfor? I guess it doesn't always, but some days it feels like there is never going to be a good day. There will be, just not yet. Cry, scream, shout, sleep, talk, hug, write it down, you will get through it chick #EhlersDanlosSucks #EveryDaySucks

Four more filling for a total of 21 this year. #EhlersDanlosSucks #ugh

When you wake up at 4am in a crap load of pain you know it's going to be a really cold morning...My Monday will be crummy #EhlersDanlosSucks

Thanking God tonight that this workweek is over. It's been really awful for pain/fatigue/mind-fog. #EhlersDanlosSucks #ChronicFatigueSucks

I was burning up 10 min ago, now I'm shivering again and my hands are blue #Dysautonomia #veds #ehlersdanlossucks

Nine fillings done in 2.5 hrs. Only 4 more to go... #EhlersDanlossucks #painohthepain #noreallythepain

Slowly but surely building those muscles back up #InjuryAfterInjury #EhlersDanlosSucks #DoYouEvenLift

Sleeping in my ankle brace, because I'm cool like that 😎 🤦‍♀️🤣 #EDS #hypermobile #EhlersDanlosSucks #EhlersDanlos #pain

Hellooooooo, subluxation of one of my metatarsals. That's unpleasant; first time this happened, I thought I broke it. *sigh* #EDS #EhlersDanlosSucks

When you suddenly feel the wrath of your disability and have to accept it is real, and happening to you. #EhlersDanlosSucks

@headdock @vickicoast @NicoleInPain @djwilliams35 @chronicpainwar @LelenaPeacock @Cpntom @RobertDRoseJr1 @StefanKertesz @tal7291 @emergVictorious @FiveOhFour @StaceyF62 @Pharmaciststeve @DanLairdMD @dr_ziegler @shelley_bean60 @ravensspirit68 @TheRebelPatient @TheRealCAWshow @PatrickDoyle_35 @AvaSkovdottir @Deeenst @DrPhilRoe @aander1987 @whyblocktruth @JeffreyFudin I have been following Jeffery, yea I don’t see any love loss there. Well kids I’m off to nap land, my mast cells are going nuts and my right hip needs to be reset. Lots of love warriors❤️❤️ #EhlersDanlosSucks

.... to impress is yourself. Some days it will be with a few tunes, winning awards, but most days it's in simply getting thru a day when standing up in any way is hard, but you manage to do it. In 30 years, look ... @billieeilish #ehlersdanlosSucks #hypermobileIsIrony

@billieEilish hypermobility. Like me. I thought I was going to be a gymnast, or better yet, dance on Broadway as a kid. But by the time I was 11, I had dozens of subluxation and dislocations. it's hard telling your body that it's ... #ehlersdanlosSucks #hypermobileIsIrony