1,730 Posts

hypermobilespoonie Home from the hospital and in so much pain but I'm happy. They confirmed a ruptured hemorrhagic ovarian cyst after a couple of hours of waiting and scans. I'm so relived to hear there is actually something wrong with me, not just my terrible hyper mobile riddled body. On the down side, my hips are gone and causing me so much pain but I cannot express how relieved I am to actually have a scan show something! Now to dust myself off and move on from the pain that the cyst is causing me #spoonie #chronicpain #chronicillness #rupturedovariancyst #EDS #ehlersdanlos #EhlersDanlosSyndrome #NEGU #nevergiveup #dustyourselfoff #hypermobile #hypermobility #hospital #pots 60min
  •   telstaar Totally understand the desire to SEE something on the results. I'm sorry that you're still in pain though. Hopefully things can be fixed soon. Hugs xxx 55min

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hypermobilespoonie Off to the hospital to get my scans done. I'm hoping they'll confirm a ruptured ovarian cyst because I can't go through this again where they tell me there's nothing and it's just my stuffed up body. Pain is a little better than the other day thank goodness but I'd really like some answers! Wish me luck! I'm sure there's going to be a huge wait due to all the holidays. Presenting to emergency it is #spoonie #chronicpain #chronicillness #chronicillness #ovariancyst #ehlersdanlos #EhlersDanlosSyndrome #EDS #hypermobility #hypermobile #pots 7h
  •   telstaar Good luck and I hope that they find something! Hugs xxx 7h

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jacs_journey This is so true. I don't show emotion much of the time, but when I do, I'm a hot mess. Once I'm upset about something, it's like EVERYTHING bothers me. I hate that I am like this. I wish I could absorb things like a normal person instead of exploding the way I do. #anxiety #depression #ptsd #orthorexia #overload #emotional #angry #SPD #scared #bulimia #binge #purge #restrict #eat #starve #stress #spoonie #screwyouED #disordered #health #hypermobile #tired #exercisebulimia #ED #EDrecovery 2d

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strengthflexibilityhealtheds Found an old #flexibility assessment and laughed. 23 was probably the last line or just beyond and I probably wasn't trying too hard. This was before I knew why I was so #flexible & that my flexibility was related to many other strange things my body could do & issues I have. And despite what the flexibility assessment says, scoring over a 16, may not be a great thing. #livingwitheds #ehlersdanlossyndrome #ehlersdanlos #hypermobile #fitnessaddict #fitspo #workout #gym #train #photooftheday #healthy #instahealth #active #strong #motivation #instagood #determination #lifestyle #diet #eatclean #exercise #invisibleillness #spoonie #chronicpain #justkeepmoving #ourstoriesofstrength #fitfam #fitmom 2d
  •   polinium We were talking about the Presidential Fitness Award and how easy it was. Or, I thought it was easy because I could reach so far, but my non-EDS brother never got it because he couldn't even touch his toes. 2d
  •   nicolelagreca_ awesome! 11h

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Normal The Domestic Pixie
domesticpixie Dont ask
I can't stop laughing
He has hit the point of Cray Cray
So gabe and I should have a Bendy act ourselves lolz
Gamers regret here lolz
#weareallcrazyhere
#funny
#hypermobile
#EDS
4d

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heatherreloaded Merry Christmas to #hypermobile people and everyone #hypermobility #hypermobilitysyndrome 4d

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Normal The Domestic Pixie
domesticpixie He is a happy boy
All the books he wanted
@andygbooks
He owns all the tree house books now and is such a happy boy
You have no idea, how much joy your books give him
I will be collecting all of your books
He thinks you guys are so funny
#supergabe
#thedomesticpixieandlifewithsupergabe
#treehousebooks
#specialneedsmumma
#EDS
#findacure #hypermobile
4d

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beccabelieveit Morsomt med ankler som ikke klarer å holde deg på beina et kne som verker og en ankel som verker ♡ #pain #dummekroppen #hypermobile #hypermobilitysyndrome #eds #hverdagsglede #godjul #nofilter 5d
  •   iborglisa "Godt" at du også har hypermobile ledd. Jeg kjenner så få utenom mamma sin famile som har det. God bedring og god jul. 5d
  •   beccabelieveit Det er visst mange som har det men ikke alle som plages med det, kjenner ikke så mange selv jeg heller, @iborglisa har mye trøbbel med en hel del ledd i kroppen og det påvirker også huden og munnen/tenner ikke så gøy når man ligger å ruller rundt ute fordi ankelen vrir seg 5d
  •   hetti85 Ankler som verker, er ikke det en del av hverdagen da?? 😯 5d
  •   beccabelieveit For noen er det vel det 😛 de verker ekstra når du vrikker de her er det rygg, knær og fingre som er verst til vanlig, @hetti85 5d
  •   hetti85 Jeg vrikker disse anklene støtt og stadig... 5d
  •   iborglisa @beccabelieveit Huff. Da er du uheldig. Jeg har stort utslag i knær og litt i skuldre/armer, men sliter heldigvis ikke så mye med det. 1d
  •   synnoveee91 Au :/ 20h

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Normal The Domestic Pixie
luc727 Knew it would catch up with me. Awful night left hip giving way /agony not sure how to cope with this and labour. Fingers crossed it goes away before the day comes #hypermobilehips #hypermobile #pregnancy #sucks #winter #cold #joints #pain #gutted #stretches 6d
  •   kbeecham91 Oooh I'm the same as well...awful isn't it! I'm not even pregnant yet have a pelvic dysfunction. ..god help me when I have children :-( I feel for you x 6d
  •   luc727 It's honestly been fine throughout my whole pregnancy-just started up last Monday and then this last night back with vengeance usual tricks aren't working :/ trying my TENS now...not sure if it's just because it's winter or the extra weight! xx @kbeecham91 6d
  •   kbeecham91 Aw no 😯 I would say have a rest and lie down but that usually makes mine worse so I'll say have a little walk or bounce on a yoga ball. Hope it eases up soon for you @luc727 xx 6d
  •   beccylouise Sleeping with a pillow between your legs may help...I had spd when I was pregnant and it really helped me. X 6d
  •   luc727 Have to all the time anyway bec even when not pregnant...I'm like an old woman! Seems to be easing though so fingers crossed ️Xxx @beccylouise 6d
  •   beccylouise Lol 6d
  •   beccylouise I must admit I do still sleep with a pillow now. ..its just more comfy! 6d
  •   beccylouise Not much longer now though! X 6d

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hypermobilespoonie Just finished work for the day. I'm exhausted. It wasn't as bad as I was expecting whilst I was there. Just the usual sore feet, ankles and hips but nothing I couldn't handle. When I got home though and took off my compression pants my left hip, which is usually my good one subluxed. So rest, elevation and early to bed it is for me tonight 😴#spoonie #chronicpain #chronicillness #ehlersdanlos #EhlersDanlosSyndrome #EDS #hypermobile #hypermobility #chronicmigraines #pots 6d
  •   bingepainting yay!!! Good job, so jealous... 6d
  •   telstaar Cuddles and compassion. I'm glad it wasn't as bad as you thought it was going to be. 👭👭👭 6d

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hypermobilespoonie After a trip to IKEA I'm exhausted and in incredible amounts of pain. Luckily my mum helped me clean my room i.e I lay on the floor whilst she did all the work so now I'm resting and watching tv. So stressed about having to work tomorrow. A girl called me up and asked me to do her shifts be chase she is quitting so now I have taken on more then I can handle. My health is already deteriorating and this isn't helping. My geneticist appointment couldn't come soon enough. I don't know how I can keep doing this anymore #spoonie #chronicpain #chronicillness #chronicmigraines #hypermobility #hypermobile #ehlersdanlos #EhlersDanlosSyndrome #EDS #pots 1w
  •   telstaar Oh sweetie :( this isn't good. I have always been lucky enough to do almost all jobs that allow me to sit down the majority of the time. Pain with eds is just intense. Hang in there. And as terrible as this sounds maybe look for other work....medical reception, data entry...that kinda stuff where you can sit down. Hard on the meantime though :( lots and lots of hugs xxxx 7d
  •   hypermobilespoonie @telstaar Thabks hun I know I need a new job because right now I'm working in fast food. At the time it was the only thing I could get but as my health has deteriorated I can't do it anymore. Just the thought of all my shifts this week and how much pain I'm going to be in makes me cry. I always take on too much which isn't good for my physical or mental health but I'm hoping that after my appointment in January they'll be able to help me. 7d
  •   telstaar Sweetheart why are you even waiting for your appointment? Have a look around now. It's not the best timing but you can look online and in the paper and just on the board at uni everywhere. Take charge hun! Getting help is great but you can also look in the meantime you have an idea of what is and isn't useful and what you need for placements etc...I just don't think you can wait unless you had no choice and you have a choice right now. I want to wrap you up and take away the pain and let you have a rest! Xxx 7d
  •   hypermobilespoonie @telstaar I know I've been looking but as you said it's the wrong time of year. Also my uni schedule for next year is so hectic that I don't think anyone would employ me for the limited hours im not at uni. I'll be looking harder in the new year when more becomes available though. My main issue is that everything has closed for the holidays and this is the time when I need my Physio the most, getting thrown back into working 7-8 hour shifts on my feet. It just isn't working. And thanks I really appreciate everything! Xx 7d
  •   telstaar Hugs I'm sorry hunni. I wish I could take the pressure off and find the job for you. In the new year there are services that help people with disabilities get appropriate jobs. That might be another avenue to try...just something to see if they can find a job that would not otherwise be available to the general public....I don't know. Sorry just thinking now. I just want you off your feet! Lol sorry for being so passionate. I get the pain though and I just hate the idea of you suffering so much. Hugs xxx 7d
  •   hypermobilespoonie @telstaar I'm definitely going to look into every avenue possible next year. I guess I'm just struggling so much but I don't have the strength to tell anyone that I'm hoping that when I go to the specialist he will see and help me. It's really silly I know but I've always been the type A personality. Perfectionist, smart, doesn't complain, puts on the face and shows everyone what they want to see. I'm the one that everyone applauds for being so strong so it's almost as if I don't know how to stop. It's really confusing I know. Luckily I have a couple weeks until Physio opens up again and maybe by then I'll be able to tell her what's going on. Thanks for all your support!!! I hope your doing ok!! 7d
  •   hypermobilespoonie @graciexoxo34 @staying_strong8 thanks!! I really appreciate all your support! 7d

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