After months of pain I finally had 2 good days without much pain, now I feel it creeping back in. 😫
#hEDS

Spent 2 hours painting a shed today and now I cannot walk. No, I did not use my feet to paint (although that would be cool) , I simply have #hEDS (hypermobile ehlers danlos syndrome) and any physical activity on my feet fatigues my ligaments to the point of making it hard to walk as my joints are not held together properly.

But I am okay with this. And proud that I finished the shed and it now looks nice and tidy.

Naively thought it would be okay to have one (1) piece of gum yesterday and now I’m waking up this morning and my jaw is paying for it. #hEDS is wild.

@alexhammy I do have a MTHFR mutation. I'm still trying Methylfolate after over a month now, if anything I'm worse but I question the dosage. 15mg seems to much daily for me, and 1mg not enough, so I alternate between the two. Plan to try 7.5mg once I've finished what I already have. It's been near impossible to find a Doc here in Iowa that knows anything about #hEDS pain muchless this new finding.

You all hear about this in the #EDS or #hEDS community yet? Does it work?

https://www.painnewsnetwork.org/stories/2023/4/12/researchers-find-cause-and-possible-treatment-for-hypermobile-ehlers-danlos

Please share my GoFundMe if you can! I’m on a payment plan for *some* of my medical bills. My partner is already paying all of the household bills because I can’t work, not to mention his own dental/medical bills.

My next payment is $206.93.

Thank you!!!

https://gofund.me/c7dab0ab

#disabled #GoFundMe #fundraiser #hEDS #MutualAid

So much pain, it's going to be a long night. #hEDS

I'm in so much pain, can't fall asleep, trying to distract myself. #hEDS

@tomkindlon @mecfs Love this thread! With all the overlap between ME/CFS, #fibromyalgia, #hEDS, #MCAS, #POTS, etc. (I love the Oh Twist website.) I firmly believe that they are all related.

For example, looking back on my fibromyalgia (dx'd) and POTS (suspected), the symptoms overlap with those of sensory overload/overwhelm. I believe living as an undx'd/unrealized autistic person brought on my fibro. And with the overlap of neurodivergence, I think there may be something there.

My ex-partner recently told me that he didn’t know how I live with #EhlersDanlos Syndrome, that he didn’t think he could do it.

I’m not strong in spite of my disabilities, I’m strong because of them. There are many kinds of strength. #DisabilityPrideMonth reflections: #Disability #SelfLove #hEDS https://t.co/98a9GbHftR

Welcome new Mastodon followers, new or old. Glad you found us here. You're in good company.

I haven't been tooting much yet, but am glad to have spun up this account as a Twitter (X) alternative.

I'll try to keep the #EDS info and tips coming here. Hope you'll join me.

#Hypermobility #HSD #hEDS #NEISvoid

Hi, I'm Ryn! (No, not that one, the Other one.)

Brain: #ADHD, #ASD, former gifted kid.

Body: #T1D, #hEDS, myopic astigmatism, generally clumsy.

Hobbies: #knitting, #weaving, #crochet, #skiing (xc and downhill), #hiking, #kayaking (just starting to get back into this), #streaming (on Twitch) both #videogames and #brickbuilding, I also love to #cook.

Pets: Three #ferrets currently, looking to get #dogs soon (rescues because they're the goodest puppers).

Anything else you want to know? Ask! I'm chatty!

(Does this look familiar - don't worry, it's just a repost after moving instances.)

So one of the things that happen now more frequently is that I get metacarpophalangeal joints dislocated, most often the middle and ring fingers. Not a full dislocation, but a subluxation. It's a pain, even as the joint usually pops back on place if I pull the finger just right.

But of course, that too is getting just a bit trickier as I age.

Fuck #hEDS

Struggling to get the right dosage of l-methylfolate, in a lot of pain today. #hEDS

I tried a battery powered stick vacuum for the 1st time today.

Traditional vacuums rough up my vulnerable shoulder joints enough that it's only a question of how bad, not if.

The stick vac was definitely easier on my shoulder, but my hands are sore+ tired. I don't *think* any damage, just feeling overworked.

It's feeling like the answer to vacuuming is pick what you want to hurt.

Time to rest. Vacuuming while in recovery was not smart, but my enviro allergies are happier.

#hEDS #POTS #pwME

Disgusted but unsurprised to have seen yet another problematic interview by the team of #EDSers trying to find #genetics of #hEDS and a cure.

Vibe:
*Look at this team of researchers with #EDS, they say they refuse to be limited by disability! Some call their #disability a superpower! They are all THRIVING!!! So great to have community members involved in this research!!!* 🤢 #ableism #supercrip #NotYourInspiration

Chronic Illness Survey Adventure, which I just found out about: for those with #MECFS, #hEDS, #POTS, #LongCOVID, or #MCAS, or who are healthy.

https://www.meaction.net/epi/

FINE, I'll make an #introduction post.
I'm Julia (not my IRL name), she/they but not picky. #aroace, some flavour of NB (demi-apagender? idek), #disabled #neurodivergent and #autistic. I have "mild" #hEDS which means I don't sublux or dislocate often but have chronic joint pain and have passed out from #POTS symptoms more than once after a shower bc my body can't regulate its temp. I love #cats and #blaseball (even tho it's dead) and indie #perfume. #LRR fan since DB3!
Is that enough? I hope so.

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/

#NEISVoid #hEDS

Weights at the gym? Fine.

Moving daughter’s things out of her apartment? Fine.

Getting dressed? Slip a rib and end up in pain.

#hEDS sucks #NEISVoid