EDS is classified into 13 subtypes, some of which include hypermobile EDS, classical EDS, and vascular EDS. Additional symptoms of the various subtypes can include chronic headache, pregnancy complications, and hearing loss.
Ehlers-Danlos Syndrome (EDS) is the generalized name for a group of connective tissue disorders characterized by hypermobile joints and hyperflexible, fragile skin.
10 mile run today, was hoping for another hour but at the end of the second 5 mile loop the body was giving very clear 'that's enough for today' signals. 4 hours on the schedule, 3 hours done.
The neverending tightrope we walk between living with a long term condition like #EhlersDanlosSyndrome and training for endurance events!
Delightful to see the bluebells poking their heads up out of the forest floor, and a shame to see the demise of another shoreline tree due to erosion.
I’ve never had pain during the Beighton score for #ehlersdanlossyndrome but after? Ugh. I’m not the most bendy of the zebras at 6/9 and yet each clinician seems to need or want to try to validate a well documented finding. Started another go round of physical therapy today, so I do understand the need to document the 200+ ROM of my shoulders. Still 6/9 and no, I’m not bending my thumb back again because this body has been keeping receipts for the last 3+ decades—thanks. @chronicillness
Today is Rare Disease Day. I have a disease that is not particularly rare, but is considered so because it's underdiagnosed, misunderstood and some of the types are extremely rare.
If there were more funding for research and more training for doctors, perhaps we wouldn't be considered rare any more. 🦓
And this my friends is why I have a screen protector and rugged #spigencase .... It's done well to survive two years of abuse from me, has to be said!
Thankfully the screen protector kit came with two extra so should hopefully last the lifetime of the phone!
I also have one on my Garmin watch, which has to be replaced on average every 6 months ... What can I say, #EhlersDanlosSyndrome makes me extremely clumsy!🙈😬😂
Fun times with EDS: I wore some cute sugar skull costume stickers on my face for Halloween, which ripped some of my stupidly thin skin off and now I have red crunchy areas around my eyes where it's healing.
I'm not the best at #introduction (s) but here goes nothin :002blush:
hoi, I'm mana, also known as momo. I'm an FC leader in #ffxiv and I play on Primal DC. I'm shy, but one of those people who won't shut up once you get to know me. I have a tendency to be introspective/keep to myself when I'm really depressed. I have #cptsd and am #neurodivergent. Also, I'm disabled from #rheumatoidarthritis and #ehlersdanlossyndrome and #fibromyalgia. Most days are good days, but the bad ones are pretty bad :blobcat_notlikethiscry:
I like modding/coding games so I've been learning #blender and #json to facilitate that. idk what else to say butt hi everyone, thanks for reading this if you did! let's be friends?:sbahri_question:
Speaking of Bi things... I'm currently using an extra dining chair in my office, which is killing my back and makes my legs sad. I think I'm finally going to treat myself to this gloriously queer office chair.
7 weeks on Duloxetine. Massive improvements to mood, energy, and pain! I feel like I have my life back again. POTS flare-ups aren't any more common but are more severe when I do have them, with added vertigo. (yay)
HOWEVER sleep isn't great. I don't feel rested in the morning. I guess it's Restless Leg Syndrome, they move all night. I've actually worn a hole in our sheet! Hoping this improves.
A question for people with Ehlers-Danlos. How the hell do you swim? I've never been much of a swimmer at all but I'm making an effort to improve. I am desperately trying to keep my legs straight and hips moving, but my lower body has its own agenda. Any tips would be greatly appreciated!
@tomkindlon@longcovid@mecfs@spoonie Yup. Compared to my son (one of the really freaky Ehlers-Danlos zebras) I'm not that hypermobile. But, as I tell myriad niecelets and nephews, this hot mess is what you get when you keep sucking it up, pushing through the pain, and getting blown off by doctors for 50 years. #chronicfatiguesyndrome + #LongCovid on top of #ehlersdanlossyndrome , etc., and the torn tendons and ligaments show. 🎉🦄
"To help people make connections: name things that interest you (but aren't in your profile) as tags so they are searchable. Then boost/repeat the instructions so others know to do the same."
Do you, or anyone you know have #EDS or #hEDS otherwise known as #hypermobility? How many more hashtags would you like? I know, #ehlersdanlossyndrome
Well let's face it, if you have it, then at least half the rest of your family has it too, amIright?
If you live in the UK, Ehlers-danlos.org is doing a govt petition (ie: one that might actually get some traction) to get us all some more research grants n'stuff because... what, up to 25% of the population, eh? The great big invisible elephant.
There's a twist, which is: separate petitions for Eng, Scotland and Wales. Look, they'll explain it when you get there, just click on the below, and get signing:
she has #EhlersDanlosSyndrome and is without community. she’s hoping to find people who understand her #medical exhaustion and medical involvement.
would any of you be willing to offer suggestions for instances?
maybe instances where people with physical #disabilities and #autism gather? in a #safe environment, with very tight rules against bullying and extremism?
New:
Female reproductive health impacts of #LongCOVID and associated illnesses including ME/#CFS, #POTS, and connective tissue disorders: a literature review
@disability folks with Ehlers-Danlos Syndrome do you find ice helpful for treating subluxation pain? I usually don’t use ice but don’t know what to do for a particularly bad shoulder subluxation that happened yesterday
I made a GoFundMe months ago to help cover my medical bills, but I’ve done a terrible job of sharing it. I just remembered about it cuz I had to pay $360 for an upcoming biopsy 😭
I’d be grateful if you could just boost my post!
And if you do donate, know that I really, truly appreciate it ❤️