We need sleep but it hurts to lay down, it hurts to stand, it hurts to sit. If you lay on your back your si joints are going out of place, your side and your shoulders, hips and knees go out, your stomach and it’s your neck and shoulders!!! Very frustrating and so very tired and hurting so bad. I just want to sleep for longer than 3 or 4 hours at a time. #bendy #HEDS #Sleep #sotired #Everythinghurts
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Hi Mighties,
My atypical hEDS goes together with High Myopia. I have like minus 7 dioptria left, minus 5.75 on my right eye. So I wear those glasses with quite thick glass.
My problem in society is that I can't recognise people by seeing their face.
So I might spend an evening chatting and talking and having fun with a couple of people I just met.
Next day- really embarassing🙈- I dont recognise the person any more.
This makes me look arrogant.
I have read in media, that Brad Pitt seems to have the same problem, but he does not know anybody else with this problem called Prosopagnosia- the inability to recognise people by their face.
At least I am not alone with this problem. My Dad and my Uncle, both with even higher Myopia than me (-15 or so), also have Prosopagnosia. We recognise people by their gaith. So when somebody stands or sits down, it is impossible to recognize this person 🙈
Does anybody out there also have Prosopagnosia? #eds #Depression #myopia #visual impairment #brad Pitt #bendy #SocialAnxiety #Blindness #Blind
Joint hypermobility (and Ehlers Danlos) is more common amongst neurodivergent people than the general population. I didn’t learn this until adulthood, but it has had an impact on my overall health all my life nonetheless. Due to hypermobility, my right shoulder pops out of its socket while I sleep— not a fun way to wake up!!
Do you have joint hypermobility or consider yourself to be double-jointed? How does it affect you?
#BenignHypermobilityJointSyndrome #EhlersDanlosSyndrome #Hypermobility #AspergersSyndrome #bhjs #EDS #InvisibleDisability #bendy #ConnectiveTissueDisorder
It happened, yet again… Subluxated my right shoulder in my sleep, after doing really well not injuring it again for a month or two. 🙄 #bendy #bjhs #hypermobile #JointHypermobilitySyndrome
Do any of the bendybunch have swellings on both knees that are identical? I constantly twist and or sprain my knees ( and ankles) but just wondering if I am alone with this anomaly as my doctor is puzzled and rheumatology appointment and musculoskeletal appointment are still not forthcoming after 2 years. I am hyper mobile in most of my joints but hips knees and ankles are the worst. ( my visual artistic approach to explaining took over 🙈 🎨) #EDS #bendy #Swelling #knees #Pain #ChronicPain #painwarrior #autoimmune
I’m trying to figure out how it is that my right leg/knee is giving me SO much more difficulty than my left knee did it decided it was done working. Then the thought occurred to me maybe it was because of my loose joints (as my doc calls them)
Open to suggestions
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#bendy #flair #sleepchallenged
I am new to autoimmune. I’ve been on Hydroxycloroquin for 3 months & symptoms were finally leveling off. Roughly 2 weeks post surgery my symptoms came back. Another flair. I’m guessing this is normal? I used to be such a good sleeper before. Now I am lucky if I get 3 solid hours at a time. My armpits are freaking out & will only tolerate any one deodorant for about 2 weeks then I have to switch. Migraines & then diarrhea & of course fatigue are sure to follow.
Does this happen to anyone else? What works for you? Any natural suggestions?
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So I was sitting like this today just chilling with some coffee when someone walked by and was like "ok pretzel". I responded with "I'm not hungry but thanks".
yeah... turns out they were talking about my seated position on a computer chair. apparently this isn't normal even for skinny people. Go figure. I was cozy!... took my foot falls asleep then I switch lol anyone else a pretzel?
I can only pretzel in certain directions though...
#EhlersDanlosSyndrome #bendy #EhlersDanlosSociety #Flexibility
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