#EhlersDanlos

[chronicillnesshumor]

This meme was brought to you by connective tissue disorders

[harmoniousworld]

I'm just gonna let it all out on here, because I don't have anyone I can talk to about this.

I feel like I'm about to die, to put it bluntly. My illness has hit such a high peak, and I'm on the summit but can't find a way down. I feel trapped at the peak... I'm at the point of no return. The final chapter. The epilogue of my life.

My heart, lungs, and vascular system are all failing. My body is failing me. I think I have a blood clot in my right leg. I've been in bed for about 15 days now. My heart is so weak. I can't breathe properly. I am near-syncope at all times, and it's made worse by minimal movement. I can hardly keep my eyes open because they hurt so bad. I'm fighting just to type this on my phone. My head is killing me 24/7. I'm plagued with many other ailments, like hyperacusis (noise intolerance), photophobia (light intolerance), vertigo, nausea, brain zaps, chest pressure/pain, ear pain, migraine 24/7, restlessness, and so much more. The head pain and head pressure is relentless and debilitating. My neck and spine are causing me major issues. I can't sleep. I feel like I'm breathing through a straw.

Is this the end for me? I need to pick myself up out of this flare. Or is it even a flare... what if this is my new normal? I can't accept the latter, because I'm truly in a metaphoric torture chamber. 😫

[theremightbecupcakespodcast]

Talking about where I have been, plus: From the Pantry, originally episode 19, to honor the recent eclipse: In which Carla starts with Dolores Claiborne and Gerald's Game--Stephen King's planned In the Path of the Eclipse series—and explores folktales used to explain solar eclipses. It gets weird.  Recommended and referenced reading: Dolores Claiborne by Stephen King https://bookshop.org/a/6560/9781501143809 Gerald's Game by Stephen King  https://bookshop.org/a/6560/9781501144202 Scarecrow Gods by Weston Ochse  https://www.amazon.com/Scarecrow-Gods-Weston-Ochse/dp/1929653956/ Seal Team 666 by Weston Ochse hardcover at Bookshop:  https://bookshop.org/a/6560/9781250007353 / ebook at Amazon: https://www.amazon.com/SEAL-Team-666-Weston-Ochse-ebook/dp/B0085UCZLE/ Dante’s The Divine Comedy: Inferno, Purgatorio, Paradiso—my recommended translation is by Robin Kirkpatrick, a leading expert on Dante. The meticulous notes are superb. This is the version translated by Kirkpatrick and illustrated by Eric Drooker: bookshop.org/a/6560/9780143107194  Hozier, “Unreal Unearth”: https://open.spotify.com/album/3gF9KIynrJaC80HbVayPMx https://music.apple.com/us/album/unreal-unearth/1687585357 How to Support Cupcakes: Audible: audible.com/ep/creator?source_code=PDTGBPD060314004R Care/Of Vitamins: https://takecareof.com/invites/chr4bw Substack: http://theremightbecupcakes.substack.com Patreon: https://www.patreon.com/theremightbecupcakes and please visit my lovely sponsors that share their ads on my episodes.  Where to Find Cupcakes: Substack: http:/theremightbecupcakes.substack.com Facebook Page: https://www.facebook.com/theremightbecupcakes Facebook Group: https://www.facebook.com/groups/theremightbecupcakes Instagram: @theremightbecupcakes and @carlahaunted Reddit: https://www.reddit.com/r/theremightbecupcakes Goodreads: https://www.goodreads.com/group/show/804047-there-might-be-cupcakes-podcast-group Contact: carla@theremightbecupcakes.com

[panda-grenade]

A little explanation of Ehlers-Danlos Syndrome for those who don't know about it.

[aspoonfullofsalt]

Please enlighten me #EDS #EhlersDanlos #EhlersDanlosSyndrome #hEDS #HypermobileEDS #HypermobileEhlersDanlosSyndrome #Hypermobility #Hypermobile #ZebraStrong #EDSZebra https://www.instagram.com/p/Crmgpn5ravN/?igshid=NGJjMDIxMWI=

[sniiboo]

Today is rare disease day let your loved ones with a rare disease know they are loved. In medical school doctors are told "When you hear hoof beats think horses not zebras." This means to think of a more likely cause over something thought of as farfetched or rare. This makes it quite hard for anyone with one of these diseases to be heard and taken seriously as they are often shoved aside as hypochondriacs. I remember always being called one by everyone including friends and family. I remember starting to believe them. I remember being afraid of stairs for a long time because I fell down them, I remember these incidents leading to me being called clumsy. I remember being in physiotherapy in grade 1, I remember wearing high tops shoes because my ankles were "weak" and gave out. I remember my parents thinking I faked stomach aches because I liked the taste of Pepto. I remember still falling down stairs as a teenager and being told I was doing it for attention. I dont need to remember the stigma and comments like being called lazy because I still face them.. but mostly I remember the struggle to find out what was wrong with me and the relief of finding out I wasnt crazy because Not everyone gets to win the battle of seeking answers. . . . . . #eds #ehlersdanlos #ehlersdanlosfighter #edswarrior #ehlersdanlostype3 #edsdiagnosisstruggle #raredisease #rarediseaseday #rarediseaseawareness #edstype3 #invisibleillness #spreadawareness #invisibledisease #hypermobility #hypermobilitysyndrome #hypermobilityspectrumdisorder #hypermobileehlersdanlossyndrome https://www.instagram.com/p/CpOvh_5D1XH/?igshid=NGJjMDIxMWI=

[thesporkwitch]

Ehlers Danlos is a spectrum. Some can go their whole lives without realizing they have it and some are forced to stop & acknowledge it, every moment. My heart aches for that kid, who didn't realize that their body was calling the shots, for so long. My heart aches for those who don't have a proper diagnosis, even still and may be blaming themselves for their lack of productivity. While there are MANY valid reasons why many may not be able to produce the days they wish to, my view point is riddled with hourly dislocations, nerves on fire, a disease that apparently wants me to crumble & nervous system issues that challenge my every move. A huge fear of mine is people won't believe me, or they will think I'm attention seeking. When your day is ruled by levels of pain that you *HAVE* to control, because life cannot be lived by rolling on the ground, screaming, it's difficult to explain to others that you have an aggressive disorder. They either think you're faking because you aren't rolling, screaming on the ground, or they think you're attention seeking because you are. It feels like a trap some days because one day I'll be able to walk and the next it will feel like I've been zoomed over, by a herd of llamas.So the only thing you can do, is just lay down. Is cry. Is hold your animal baby close as they let you sob your sadness into them, because it's been two hours and you *STILL* can't get your neck back into place. The last week has been like that for me. Sadly we can't go to the doctor every time something hurts horribly. And when you're I'll, you try EVERYTHING to not be. So please just know that you are seen, valid and important! It's ok to not be ok. #elhersdanlossyndrome #eds #zebrastrong #hypermobile #chronicillness #nospoons #yourenotalone #ehlersdanlos https://www.instagram.com/p/CosvulWSWNp/?igshid=NGJjMDIxMWI=

[medicalmysterysciencetheatre]

Food Intolerance, Diet, and Hormones with Lipedema

Facebook Group “Food Intolerance and Lipedema” founder Cheryl Scoledge goes into the information she has learned through her exploration and experiments with her personal illness. 

[jinxtrickster]

Bunnies are here and ready to spread cheer! They will soon be available at @merccreations.9292 Or you can order through direct messages. #kawaii #bunny #bunnies #pastelfashion #kawaiifashion #kawaiifashion #kawaiishop #cuteshop #amigurumi #plushie #crochetersofinstagram #crochet #yarnaddict #crochetaddict #makeitpremier #michaels #chronicillness #invisibledisability #ehlersdanlos #potssyndrome #disabledartist #invisibleillness #invisibledisability https://www.instagram.com/p/CofJlWrOroy/?igshid=NGJjMDIxMWI=

[orthopedicsurgeon2]

Shoulder dislocations

The shoulder is the most moveable (adaptable) joint in our body. It causes you to lift your arm, to turn it, and to reach up over your head. It can turn in numerous ways. This more noteworthy scope of movement, which is absent in some other joint can be that as it may make the shoulder vulnerable to disengagements. Shoulder insecurity (disengagement) happens when the leader of the upper arm bone is constrained out of the shoulder attachment. This can occur because of unexpected damage or abuse.

When a shoulder has disjoined, it is defenseless against rehash scenes. At the point when the shoulder is free and sneaks out of spot over and over, it is called interminable shoulder unsteadiness. Our shoulder joint resembles a ball (the upper finish of the humerus bone) and attachment (glenoid). The ball is bigger than the attachment. This makes our shoulder is the most adaptable joint in the body, enabling you to toss balls, lift overwhelming articles and connect practically any way. The labrum is a ring of extreme and adaptable tissue on the edge of the glenoid. It appends the glenoid to the container and makes the glenoid attachment more profound, consequently making shoulder separation more outlandish.

[nightsinvhs]

Idek what to say

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A post shared by myzeria ⸸⛧ (@child_of_sekhmet)

[chronicillnesshumor]

I uploaded a new t-shirt and mug design on Etsy [ https://tinyurl.com/3kcz9nmu ]

[metalheadsforblacklivesmatter]

I don't care if your 9, 20, 35, or fucking 50. Your patents can go to the doctor with you. It's called your patient advocate.

See I have bad reactions to medications and sometimes those conversations with doctors go

"so what was your reaction?"

"Honestly I cannot remember"

Sometimes it's symptoms like brain fog that causes me to not remember. Sometimes I lose time. Sometimes I just sleep so much. There's a lot of reasons why I can't remember. But I always remember it was really bad the doctor should know I had a really bad reaction.

And I do not have a partner that can go to appointments with me.

So I bring a parent.

Why? Because when the doctor asks "What was the reaction" the parent actually remembers.

But the number of doctors that have infantilized me "You're a grown adult you don't need your parent."

And the thing is. I know what the doctor is doing when they do this. My parents won't let the doctor dismiss my symptoms because my parents are the ones that have to drive me to the emergency room when they get too bad. But if the doctor refuses to let my parent in "You're a grown adult" the "diagnosis" I get is always "Oh, it's just anxiety".

And I feel like doctors know when I'm having brain fog and therefore they can take advantage of me like that because I'm too confused to argue with them. "Oh. Why do you let your doctor talk to you like that". YEAH THAT'S A SYMPTOM OF MY MIGRAINES. THAT'S KINDA WHY I'M GOING TO THE DOCTOR.

-fae

[disabled-dragoon]

do you know if forearm crutches help with fibromyalgia/hypermobility?

(sorry if i’m being annoying i’m not sure who to go to)

You're not being annoying

I've certainly seen people with fibromyalgia and hypermobility using crutches before. If it's something you're considering and you want more information, I've linked some stuff for you:

Will Crutches Help Ease Pain of My Fibromyalgia?- Article from the website crutchinfo.com, by someone with fibromyalgia. Gives information on crutches, fibromyalgia and some advice on choosing the right crutch for your pain, if that's a root you choose to go down.

Best Crutches For Fibromyalgia: Information on mobility aids that could help, specifically crutches. With information on the different types, some pricing and some details on the features of each one.

Pain Management: Link to an article by the Hypermobility Syndromes Association. I think the article could stand to be just a little more detailed in places, but it gives advice on help and aids for other aspects of pain you might not have even considered.

Hypermobility and Crutches: Any time I search for something vaguely disability related I get directed to reddit, so I cut out the middle man. Here is a list of posts I got after typing in ""hypermobility" AND "crutches"". I've had a flick through- most of them come from the r/hypermobility and r/ehlersdanlos communities. It could be useful to read other people's experiences who have dealt with a similar question.

---

I know it's not a lot, but hopefully, it's enough to help. Though I'm happy to provide more if you need them!

[wizardnuke]

lucky that i've only have a couple minor instances of carpal tunnel. instead my joints or tendons or something in there likes to suddenly inexplicably shift out of place and drastically reduce my range of motion until i figure out the exact angle i need to hold my wrist in for it to pop back into place #ehlersdanlos

[kjsadd]

r/ehlersdanlos > Pen grips? hEDS

Lots of suggestions in there, but the only one I haven’t already tried was:

If you'd like to make a very specific grip to your hand, try buying Sugru and creating your own with it. It's a kind of curable rubber stuff.

https://www.amazon.com/Sugru-Tesa-Household-Everything-Personalizing/dp/B089WHGQDP/