#ehlers danlos problems
“Just do yoga! Your health care team don’t know what they’re talking about!”
Me after trying yoga:
Workout For Daily Life
Reblogging for the neck pain ones… whoa Nelly, do I ever get the most killer neck pains.
if youre hypermobile or have eds be careful with some of these
Having EDS and having no gauge for how far you’re meant to stretch.
“You’re telling me I’m not meant to touch my shoulders with my head during the head tilt? Next you’ll be telling me my wrists aren’t meant to click like this!”
Post link
I know it’s not the worst aspect of being disabled, but I loathe the sheer amount of rubbish I generate from all my medication boxes and blister packs, and a lot of it isn’t recyclable
I thought getting an Ehlers Danlos Syndrome diagnosis would be straightforward because of the Beighton Scale, but boy was I wrong.
My rheumatologist said that my skin matched the criteria for EDS, but she didn’t think I was hypermobile and didn’t think I had EDS after examining some of my joints.
A few months later my pulmonologist, who sees a lot of POTS and EDS patients, examined my skin and my joints and said I was hypermobile. He said I probably had EDS and referred me to a geneticist.
I mentioned my hypermobility to my cardiologist, who also sees a lot of POTS and EDS patients, and he examined me and agreed that I’m hyper mobile. He went on to say, though, that I “don’t want an EDS diagnosis” because the symptoms of EDS are hard to deal with. I wanted to tell him “yeah, I know, because I’m dealing with them” but I kept my mouth shut.
Three doctors shouldn’t have three different opinions about what my diagnosis should be.
We’ll see what the geneticist says in August.
Sooo I had sent my friends a video of my leg having a big shaky shaky (aka party mode aka leg spasms) aaaaand this is what happened.
“Normal” people: Eating and enjoying veggies to stay regular.
Me with GI dysmotility: Poopin’ the asteroid that murdered the dinosaurs because I decided one time that I missed green beans & mixed veggies too much to say no.
Ehlers-Danlos Post Halloween Special: Full Skeleton! Must Go!
*all sales final
My shoulder today:
You know you have GI Dysmotility when…
I just looked up the “normal” digestion times for different foods to make it completely through your system…
This is fake right? Like that’s not real at all is it? LOL wtf?! Who’s digestive tract really works like that? I’m…so… whaaaat? No? Whaaat? Nuuuooo…pffft… Really? I just… ooookaaaay… um… welp…
*Breathes*
*shoulder dislocates*
Was about to go to the er this morning because I was having a hard time breathing and “staying awake” and I decided to take half a benadryl while I was getting ready… shortly after taking it
Hey Ehlers-Danlos friends! How’s your skin holding up with all this extra handwashing? Mine was starting to turn to trash yesterday, thankfully my mom had two extra jars of Aquaphor on hand so I slathered my hands up really good and they feel so much better!
does anyone know where i can get a cane that doesn’t look like something my great uncle would use? ya know, the boring grey ones that just scream “old person” ? or should i get a boring grey one and cover it in googly eyes?
EDS Culture is having to explain to family members why you’re suddenly using a wheelchair (or other mobility aid) and them not believing you truly need it
Hey! Welcome to this account, you’re welcome here! Whether you have questions about the condition, questions about treatments, or just need to rant or vent about your condition, feel free to do so! Asks are open and anonymous. Stay strong zebras!
if you are not wheelchair bound, and need to step out of your wheelchair, please do it.
even if youre in public, dont worry about what people will think or say, if you need to get out of your wheelchair, do it.
you dont owe them an explanation, you dont deserve whatever stares or comments youll attract, and you are still disabled, you still need the wheelchair even if you dont need it constantly.
dont let what people might say or do stop you from getting out of your wheelchair.
I get weird looks when I’m out on a walk and have to get up to fix my smart drive motor, when I cross my legs, when I pull my own chair out of the trunk and put it together. But none of those things mean I’m not disabled and don’t need my chair. Use your mobility aids!
When you ask a fellow spoonie how to get your doctor to send you for an upright MRI because of concerning symptoms that are being ignored (asked because this person has my condition, has had an upright MRI, and subsequent spinal fusion because the upright finally showed the full picture), and they say you shouldn’t dictate your care and should trust your doctors and just let them steer your care If I do that, I will literally get no care. My doctors do the bare minimum, and aren’t interested in trying to look deeper to find out why I feel like shit constantly. And I see people in my position all the time.
No hate to those of you with good insurance, good doctors, and an actual treatment plan prescribed by your doc, but some of us have doctors that ignore symptoms, don’t bother to even read your records, and generally treat you like a fraud. I have been have severe migraines with neck pain and pressure in the base of my skull like you would not believe (and then my fucking eye started protruding during one), and my supine MRI showed nothing, likely because, as many zebras know, supine MRIs can hide instability.
FIGHT FOR THE TESTS YOU NEED. if your doctors aren’t listening, but you can’t just pick up and find another doctor, ADVOCATE for yourself, don’t let them tell you that your concerns are invalid, and DON’T let them ignore your symptoms. Doctors don’t know everything, as much as they want you to think they do. I had a doctor, who had practiced for like 20 years, tell me that EDS was treated with steroids. This man clearly A. Hadn’t bothered to look over any of my paperwork, because I specifically stated my condition and that steroids were not good for people like me and B. Clearly hadn’t continued his education since his med school graduation. If high school teachers have to do continued education, doctors can read some fucking updated studies.
DOCTORS WORK FOR YOU. You pay them, sometimes hundreds of doctors if your specialist doesn’t take insurance like mine, because they are supposed to do everything they can to find out what’s wrong. If they ignore it, yell about it. I know I fucking will.
If you would like to hear my diagnosis story, please watch my video, but allow me to give you a brief explanation as to why I am trying to raise money. I have been diagnosed with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, chronic migraines, sleep apnea, Raynaud’s, chronic fatigue, and chronic pain, along with a yet to be fully diagnosed GI problem (basically I can’t eat anything without severe pain, bloating, and running to the bathroom every 10 minutes.)
My mom has been doing everything she can to take care of me, but the unpaid bills are piling up, and I am now needing a power assisted wheelchair, a new set of ring splints, and I am trying to get a service dog for mobility assistance and medical alert. Being that we are already in debt from medical bills, our only option is to try crowdfunding.
I would greatly appreciate it if you would share my story. I am trying my hardest to keep fighting this condition, but I need some help to get some very important aids that will greatly improve my quality of life, and my ability to participate in life again.
Sup zebras, I’m starting an EDS YouTube channel. It’s called Braced For Impact (because this bitch is buying new braces ever other week it seems). No videos yet, but I just got my new phone, so let the filming commence!!!
My mom is suddenly mad about “having” to go to my GI appointment tomorrow? She always wants to come to my appointments, plus it’s better to have someone with you, especially being a young woman. And this is the first time ever going to this doctor/ practice.
Also, she wants to make me take an uber to the doctor so she can go out with her boyfriend. How fucking childish.
