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mya.with.eds I'm 15 years old, and I have Ehlers-Danlos Syndrome type 3. A rare connective tissue disorder, so I don't have collagen. I pretty much don't have the glue that keeps your body together.
I started having problems from the age of 2 onwards, I broke my bones constantly as I child. They were all minimal injuries, like tripping over. I saw more than 20-30 specialists over my childhood trying to find an answer. I ended up breaking ten bones all together. When i was 8, i developed a bone disease in my right ankle called osteomyelitis, Just out of the blue. They said it was just very bad luck. I was rushed into hospital that night, and was in emergency surgery. I then spent eight weeks in hospital on a pic line with heavy antibiotics.

When I turned 12, things got even worse. I started tearing my ligaments from walking on flat ground, picking up a glass of water, my friend pulling my arm. The simplest things. Once again, I saw soo many specialists, and nobody could work out what was wrong. They said I was clumsy, I had loose ligaments, flat feet, hypercondriac, and so on.
Though it got worse and worse, and I started dislocating when I was 13. From just picking my up phone I would dislocate my wrist, my elbows and fingers. Finally I was diagnosed in April this year after being on a horrible medical roller-coaster for years, from a Rhuematologist, telling me I had EDS lll.
Since April, my condition has declined rapidly. I am now in a wheel-chair. I dislocate 10-20 joints a day, from just eating or showering. My shoulders, jaw, collarbones, elbows, wrists, fingers, ankles, hips and toes. I'm in chronic pain daily, and have been for year. The pain is agonising in all my joints, like being jackhammered for hours.. There is no cure for my condition, and no pain relief.. I'm allergic to all heavy medication like morphine, fentanyl, OxyContin and Endone. All I can do is take panodol and nurofen, and it doesn't even touch the side of my pain.
I'm currently in hospital because I dislocated 5 joints at once.
I would really love to spread awareness on the rare, chronic, debilitating condition.
If anyone would like to contact me, my email is - mya.with.eds@gmail.com
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running_fish So this basically explains most of my medical issues. Some days are good and some days are bad...it normally just depends on how much my joints want to cooperate with me. It's frustrating and it's painful. I'm so tired of being in pain and people acting like I'm just dramatic. No, I'm legitimately in pain. My joints ache and burn. Today, most specifically, it's my knee and hip. I wish more people could understand how much this sucks! Yeah, I'm good at yoga, but at what cost? #hypermobility #EDS #elhersdanlossyndrome #invisible #spoonie #hypermobile #joints #pain #chronicpain 6h

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thebexabody It amazes me since I've been playing along with @dancingmindva #DMRevolution seeing myself in these poses. I'm my mind I look like the #yogini pros that push out beautiful pictures daily of graceful & bendy poses. I felt like my foot was so high here and my back was really bent but looking at the picture I realize how far I have to go. But that's okay. We all start somewhere. It's those small steps and eye opening experiences that make us better, stronger and healthier. I'm never going to be able to put my foot over my head, but it doesn't stop me from trying. #dmycc #40daystoPR #yoga #yogapose #yogachallenge #balance #dancer #natarajasana #hypermobile #onedayatatime #yogaeverydamnday 12h

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sam_and_leo What's that at the bottom-right? My view for 30min... The YMCA ceiling. Why? Because that dude on the top basically drug me to the mat and tackled me to the ground. He would NOT let me up. Oh. And there's my water bottle. Lol. But I'm ever thankful for Mr. Bug's help. Had it not been for him, I'd be lights out!

#servicedog #greatdane #pitbull #merle #blueeyes #goodboy #medicalert #love #cute #dog #puppy #eds #ehlersdanlos #ehlersdanlossyndrome #hypermobile #hypermobility #gastroparesis #gastro #dysautonomia #chronicpain #chronicillness #fibro #fabromyalgia #endo #endometriosis #spoonie #fighter Go follow Mrs. Bug @hope_the_miracle_mutt!
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jainyybarbell good morning || #tb to being scared of snatching 12lbs - its been a while since I've really focused on my shoulder. but honestly being hyper mobile isn't fun at all. Like okay I'm glad I'm not stiff like a board but at the same time i feel so "flimsy". I think being stiff is better because you can work on your mobility. but being very hyper-mobile, well, you just got to get stronger. & that takes a lot of time. aaah but what else can I do? just got to wait it and work for it, || #crossfit #snatch #letslift #hypermobile #progenex #powermonkeycamp #strengthisbeauty #kuwait #keepkuwaitfit #mybox #barbell #onecommunity #community #communitylove #helpingothersucceed #reebok #lululemon #roguered 2d
  •   besma_13cups I have hyper mobility syndrome too! It's genetic. Was diagnosed at age 13 when My knee caps slid sideways while playing soccer. It makes WODs twice as hard sometimes. Rock tape helps a lot in stabilizing shoulders and knees. I've been meaning to post videos on how to use them to stabilize joints for hyper mobile people, but didn't think anyone would benefit from them. 2d
  •   jainyybarbell @besma_13cups haha yes genetic i used to rock tape at first but i feel that strengthening the muscles surrounding it to keep it in place is better off in the long run.. but id love to see your videos 2d
  •   besma_13cups Good for you. Strengthening helps a lot. I can't do any workout without taping.. Unless I want a total knee replacement by the age of 40. My doctor made sure I understand very clear the level of my hyperextension and what it does to major joints. The gene mutation affects the structure of collagen at varying levels. Some people can't even walk without a cane. We're very lucky, el7imdellah. Good luck! 2d
  •   rodolfofarro 2d

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sam_and_leo This dog right here...... He rides in the back until I go in to pay for gas. Then, I come back to find this. Granted, it does put a smile on my face :-) #servicedog #greatdane #pitbull #merle #blueeyes #goodboy #medicalert #love #cute #dog #puppy #eds #ehlersdanlos #ehlersdanlossyndrome #hypermobile #hypermobility #gastroparesis #gastro #dysautonomia #chronicpain #chronicillness #fibro #fabromyalgia #endo #endometriosis #spoonie #fighter Go follow Mrs. Bug @hope_the_miracle_mutt! 3d

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mrseventslv Humbling experience.., had the honor of emceeing the #Paralongdrive in Mesquite, Nevada. Was able to see old friends and make new ones! These athletes are #Champions! 9 countries represented and 60 participants. #ability #golf #golfmesquite #defyingtheodds #inspiring #paramobile #hypermobile 3d

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misskim005 Okay fellow #spoonies. I need help. I feel like my doctor isn't really hearing me or fully believing the extent of my #pain. I've had low back pain for as long as I can remember. Recently my #sciatica flared up the worst it ever has and led to me needing lidocaine patches and voltaren gel along with several torsos shots and my oral pain meds. I was also relying on my cane to help me walk which caused stress on my wrist. Along with that pain, almost every night I get this deep down pain in my legs that feels like my legs have been beaten with a baseball bat. (It reminds me of growing pains but multiplied and intensified by 1000.) I'm currently on a waiting list to see a Dr about my #spine but have no idea what's going on. I also find it strange that my pain is always the worst at night. Any ideas or does this sound familiar? #InstaMessageApp #chronicpain #chronicallyawesome #painwarrior #painpaingoaway #medicalmystery #medicalzebra #EDS #hypermobile #spoonie #spoonielife #spooniestrong 3d
  •   nataliepajamabookgirl I'm in the UK and the pain your describing in your legs sounds like the starter pain of either a problem with your discs or SI joints, or nerve damage. X 3d
  •   misskim005 @nataliepajamabookgirl Thank you so much for the input! I am just to the point where I don't know what to do so asking others for advice was my best option. Now I know what to look into. 3d
  •   nataliepajamabookgirl No problem. I suffer with all three, and what you describe is what I felt at the start. I'd push more for the nerve side of it though, by getting looked into for that first they can determine the pain path if it is something else. Good luck with it all @misskim005. I feel for you so much, it's not nice at all x 2d
  •   misskim005 @nataliepajamabookgirl I can't get my insurance to pay for an MRI so I hope I can figure out another way to find help. 2d
  •   nataliepajamabookgirl That's such a shame. I have everything crossed for you to somehow manage to get help. I forget how lucky I am over here with the NHS. X 2d
  •   misskim005 @nataliepajamabookgirl They want me to do PT first... The problem is, the closest physical therapy place is 2 hours away. So 2 hours there, an hour of pt then 2 uncomfortable hours home. Not to mention the price of gas it would cost to do all that. I swear the people in prison get better treatment. 2d
  •   rrreeefff @misskim005 do you have access to a pain management doctor? 2d
  •   misskim005 @rrreeefff Not in my town. I'm going to have to look into finding one though. Might be my best option. 2d

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sam_and_leo That moment when your SD does more harm than good... Lol. He got a little too excited with an alert and bruised me all down my thigh. But for real... Lol
#servicedog #greatdane #pitbull #merle #blueeyes #goodboy #medicalert #love #cute #dog #puppy #eds #ehlersdanlos #ehlersdanlossyndrome #hypermobile #hypermobility #gastroparesis #gastro #dysautonomia #chronicpain #chronicillness #fibro #fabromyalgia #endo #endometriosis #spoonie #fighter Go follow Mrs. Bug @hope_the_miracle_mutt!
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  •   panda_and_loki Oh oww 3d
  •   esmaeadelaide Ouch! 3d
  •   addie_and_marissa I was just browsing through Instagram and came across this post and couldn't help but laugh a little...I have a bruise on my thigh almost IDENTICAL to this from my SD going a little over board with an alert! 3d

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sam_and_leo Leo's "just got out of the gym" face vs my "just got out of the gym" face. Lol. He alerted BEAUTIFULLY. I was doing the leg exercises, and at a point, he jumped up on my legs and wouldn't let me do anymore. When I went to stand, I got really dizzy, so he guided me to one of the stretching mats to lie down. He laid himself on top of me until I was "allowed" to get up :) Of course, when I tried to go from my knees to standing (the part where he usually helps do momentum mobility pulling) he blocked me instead, telling me I wasn't ready. So I waited a few more minutes until he turned and was by my side. He helped me up, and off we went! :D Gotta love him!!! #servicedog #greatdane #pitbull #merle #blueeyes #goodboy #medicalert #love #cute #dog #puppy #eds #ehlersdanlos #ehlersdanlossyndrome #hypermobile #hypermobility #gastroparesis #gastro #dysautonomia #chronicpain #chronicillness #fibro #fabromyalgia #endo #endometriosis #spoonie #fighter Go follow Mrs. Bug @hope_the_miracle_mutt! 5d

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mamaandmoreakazaz Repost from my yoga account - do come by! -- Messaging with the fabulous @colure about hyper mobility today - I know it's something lots of yogis contend with, so thought I'd share my favourite illustration - on the left, I feel like my fingers are bent but look "straight", while on the right, fully extended. #yogi #namaste #hypermobile #flexyyogi #instagood #hypermobile #hypermobility #bendyyogi #ibendsoidontbreak 5d

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zavel.castro "Mucho ruido y pocas nueces" #Shakespeare #Hypermobile #Aplausos #Cervantino 5d

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yogamamazee Messaging with the fabulous @colure about hyper mobility today - I know it's something lots of yogis contend with, so thought I'd share my favourite illustration - on the left, I feel like my fingers are bent but look "straight", while on the right, fully extended. #yogi #namaste #hypermobile #flexyyogi #instagood #hypermobile #hypermobility #bendyyogi #ibendsoidontbreak 5d
  •   perthyogagirl Aaah I contend with hyper mobility too! I get mostly frustration by my knees hyper extending because it means I have really weak quads which compromises my balance!! Don't even get me started on elbows!! 5d
  •   colure Wow girl I think we have the same joints!! My fingers look the same when I do that too!! Definitely illustrates the need for adaptation, ease, & awareness in our practices. Less is more. Thanks for this beautiful post! <3 5d
  •   yogamamazee @colure @perthyogagirl I always have to remind myself to be so careful with knees and elbows, exactly as you say - it's also a useful illustration to explain to others the difference in some people's apparent flexibility/inflexibility. Some things can be worked on over time if they are muscular, but if your frame, your skeleton is built differently (ie the opposite to hyper mobile) then you're just never going to be able to make a pose look like someone who is, and that is perfectly ok! 5d
  •   colure I love that! Yeah definitely- every body is unique and different, and each yoga practice is equally unique and different as a result!! And it's all good <3 5d

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sam_and_leo Haha all pooped out! That makes two of us. PT was absolutely excruciating today. But we made it! :D Breathe in, breathe out. Keep smiling, keep fighting!

#servicedog #greatdane #pitbull #merle #blueeyes #goodboy #medicalert #love #cute #dog #puppy #eds #ehlersdanlos #ehlersdanlossyndrome #hypermobile #hypermobility #gastroparesis #gastro #dysautonomia #chronicpain #chronicillness #fibro #fabromyalgia #endo #endometriosis #spoonie #fighter Go follow Mrs. Bug @hope_the_miracle_mutt!
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Mayfair Marina Pearson

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