So I come to the hivemind:

do any of you all have any recommendations or favorite things that you have used on your own person to help keep you from accidentally injuring yourself?

Not just hands/fingers/wrists. But also arms/elbows, shoulders, knees and ankles.

#eds #Hypermobility #hsd
3/4

Hey. Help us pay for my new wheelchair? I'm desperately hoping the issues with my current chair are that it's old and battered and possibly needs more in repairs than would be worth it (it's better than NOT having one, don't get me wrong...). But $1,100 (rounded slightly up) is a dear price even if cheaper than we'd ever get anything custom.

We're hoping to pay it off in chunks, since we used a credit card, but. The assurance of *having* the money to pay it off would be awesome - and y'all can say you helped buy my chair! Win/win!

Current goal is at 0/$100

(Unless that's changed literally while I've been typing )

My cashapp is $Inoru, spouse's CashApp is $ceahhettan and his
Venmo is @/californiummm; ask them for paypal/zelle. Comment wheelchair or a Blue wheelchair emoji with specifically-for-this donations! Any amount helps and I/we appreciate!

<*wiggles in New Wheelchair excitement*>

#crowdfund #crowdfunding #transcrowdfund #transcrowdfunding #disabledcrowdfund #disabledcrowdfunding #deafcrowdfund #deafcrowdfunding #helpfolkslive #HelpFolksLive2025 #mutualaid #MutualAidRequest #moneyhelp #ambulatorywheelchairuser #hEDS #hypermobility #hypermobileEhlersDanlosSyndrome #wheelchairuser #powerchair #wheelchaircrowdfunding #powerchaircrowdfunding #IsThisEnoughHashtags #hashtag

via @camilla

https://kolektiva.social/@camilla/113783600650227501

Honored to have my crochet patterns featured in the Zebra Club's holiday gift guide

https://jeanniedibon.com/hypermobility-holiday-gift-guide/

Crocheting with hypermobility has been tough. Over the years I've had to limit my time spent crocheting, invest in some better hooks & braces, and take breaks from it every now and then due to injuries.

I always come back to it, because it remains a calming activity for me in its own way. With enough care and caution, I'm able to keep doing it.

My mood all fall.

A slightly more bite-sized version of the studies I just shared.

This is FUCKING HUGE.

First of all, it means all of us who never got a full hEDS diagnosis (or who got downgraded when the diagnostic criteria changed) probably have the exact same genetic condition.

Secondly, there’s eventually going to be able to be a TEST for this??? No more “it’s all in your head” or “it might be anxiety”

https://www.ehlers-danlos.com/new-research-identifies-potential-biomarkers-for-diagnosing-hypermobile-ehlers-danlos-syndrome-and-hypermobility-spectrum-disorders/

How many bones have you broken, and are you hypermobile?

This is a poll for everyone, but I'm tagging a few specific groups to make sure I get a good sample!

People with hypermobility may be more prone to long COVID, study suggests | http://theguardian.com

"People with excessive flexibility 30% more likely to say they had not fully recovered from COVID, research finds"

#LongCOVID #hypermobility @auscovid19

Source: https://www.theguardian.com/society/2024/mar/19/people-with-hypermobility-may-be-more-prone-to-long-covid-study-suggests

One of the most frustrating things about finally having my severe joint pain and mild hypermobility taken seriously after half my life is I don't know what's "normal" anymore.

Some part of my body cracks, or I move in a certain way, and I wonder, "is this a thing most people do? Or is this a My Body thing?"

I realize that some question the existence of #LongCOVID or whether it might be a risk factor for those of us with #EhlersDanlos.  If you are struggling with family, friends, employers or schools  to explain your COVID precautions / risks, these articles may be helpful. These articles may also be helpful in securing disability accommodations

First up an article from this summer written by the Ehlers Danlos Society 

https://www.ehlers-danlos.com/long-covid-and-generalized-joint-hypermobility/

Second, this year the Nature magazine specifically called out Ehlers Danlos as a risk factor for Long COVID

https://www.nature.com/articles/s41579-022-00846-2

This last article just came out this month, and has undergone peer review

"Long COVID and the Diagnosis of Underlying Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders"

https://onlinelibrary.wiley.com/doi/10.1002/pmrj.13120?af=R

#EhlersDanlosSyndrome
#Hypermobility
#Covid
#Disability

It is important to always assess medical articles carefully and to discuss issues and concerns with your physician.

Howdy kind Mastonauts! Welcome to this new account.
I made (another) account to share things that are not health or entertainment-related. I have dedicated accounts for those things (links in bio).

I will boost those toots when I feel them "good enough" to share with you.

I'm #AuDHD (#ActuallyAutistic and #ADHD). I live with #Fibromyalgia and #Hypermobility. Got a fake hip. Love fitness. Have an eating disorder that I struggle with. I also have been fighting with #ChronicDepression for many years.

My big love is my 10-year-old Labrador lady Arwen. She's slowly showing her age, bless her, so I'm often worried about that.

I have a silly kind of humor and often am either too straightforward or too anxious to say anything.

Have a nice day everyone!

Much like a cat, my body is technically classified as a highly viscous liquid.

Went to see an OT for an evaluation. She goes “So which of your fingers are hypermobile?”

It’s all of them. All of the things are hypermobile.

Today I quit physical therapy and I'll see whenever I get enough courage and optimism back to search for a new one.

I recently got an injury I couldn't solve myself, so I searched help from a PT. The first one I got helped decently with this injury caused by #hypermobility, even though she didn't understand #MEcfs and all that comes with it.

After a few appointments she went on long sick leave (looks like long covid) and I got a replacement PT. The new PT didn't understand ME or my injury. She talked to me like I was a child and constantly said muscles and joints were supposed to hurt, invalidating my pain. I went twice and cancelled my other appointments, not wanting to go back.

The replacement PT started working less (looks like long covid) and a second replacement PT showed up. I had one appointment with her. She didn't understand ME, hypermobility or my injury. She kept telling me that I shouldn't be so scared of pain (I'm not) and that I shouldn't avoid movement (I don't). She accused me of lying when I told her I'm as active as I can be. Even when I explained I know the difference between good pain in muscles that are healing, and pain of something going really wrong in your body, she never listened to me. She said it's all in the mind and that I should just distract myself. She said that I should just exercise and I will be well again.

She refused to listen to my boundaries and physically pushed my hip with the injury into a painful position, worsening it in the process. I told her to stop and she took it as evidence that I'm a pain avoider. I've been to plenty of extremely painful PT sessions and I know that some types of pain are for my own good, but man, this definitely wasn't it. This was extremely misinformed treatment that actually harms patients. I am never going back.

I feel hurt, upset, and humiliated, even though I've had encounters like these dozens of times already! You never truly get used to it. ME/cfs and hypermobility often aren't taken seriously. But, it also didn't help that I was wearing a mask to avoid #covid and that I was immediately perceived as a hypochondriac. I didn't even stand a chance at being taken seriously.

Wearing a mask is such a disadvantage in healthcare now. I have several other illnesses that are generally recognized and not as contested as #MyalgicEncephalomyelitis. However, since mask mandates ended in healthcare settings half a year ago here, doctors have slowly started to approach these illnesses with doubt and skepticism too, because I refuse to unmask. It's starting to get more difficult for me to get my regular prescriptions.

I genuinely fear for my future and quality of life, if more and more care becomes inaccessible, both because of #covid19 infection risk and because of the way healthcare workers now treat people who try to avoid infection. This is starting to become the norm.

Highly recommend this episode of the Bendy Bodies podcast, whether you have #hypermobility or not. Great recommendations on traveling with chronic pain/illness from folks who both live with and help others deal with such conditions. #NEISVoid #ChronicPain #ChronicIllness

At the recommendation of one of my #hypermobility support groups, I’ve started doing median nerve flossing exercises twice daily, and they really seem to be helping with my neck/shoulder pain. Passing the video I used in case it is helpful to any of my #ChronicPain friends on here:

https://insyncphysio.com/chronic-neck-pain-shoulder-tightness-median-nerve-flossing/

Figured I would make a new introduction post for the newcomers to Fedi. Long post because too many thoughts.

I'm a transmasculine artist (I unfortunately do not post publicly due to the current AI art stuff going on), I'm currently undiagnosed for alot of stuff, but I am suspected to be neurodivergent. I have hypermobility and I use a cane as an emergency mobility aid whenever my knees decide to dislocate, braces for whenever I am having joint pain aswell.

I occasionally play games, however I am not currently playing any at the time of writing this. I enjoy looking at FOSS and other open source/libre alternatives to everyday applications and websites I use.

If you want to buy some of my art or support me, I have a Kofi, a RedBubble and a Society6. For extra information such as pronouns, I have a pronouns.page in my bio, which has all of the sites that I'm associated with.

Word of warning: I don't post often, I mostly just boost on here, since I don't have the words to say whats on my mind most of the time. I also vent on here. I do try my best to tag stuff correctly and CW my vent posts.

Happy to be here!
#Introduction #TransMasc #TransGuy #Artist #HyperMobility #Neurodivergent #LGBTQ