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    Another diagnosis

    Hello everyone has anyone heard anything about scapula dyskinesis? Or experience with it ? Sometimes called winging. My scapula is twisting rather than sliding IDK I'm confused. Apparently I've had this issue for a long time but the pain was continuously ignore by every doctor I asked. New doctor tells me that's what it is and pretty much ended the conversation at that. Anyone got any advice or suggestions #EhlersDanlosSyndrome #ChronicIllnessEDS #Hypermobility #ChronicPain



    I feel terrible...went off my Procardia and Vesicare all at once and am taking a 10 day med that interacts badly with them. So cold turkey it is. Just diagnosed with #idiopathicCNShypersomnia and this is the first step to determine what medication I will be on. My #Anxiety shot up along with agitation and irritability. My already difficult time parenting #ADHD and #ADD with #ADD became even harder. #Fibromyalgia #InterstitialCystitis #Vestibulodynia #Hypermobility to name a few. Not been able to drive and got an appointment at an epilepsy center finally to get a prolonged EEG after my abnormal one. I feel like life is getting a lot harder and I feel like I'm working a lot harder with fewer noticible successes. I'm trying my best to remember to be thankful...I just feel so sad right now, really feeling the losses stack up. I'm bummed because my pet hasn't seemed like he wants me to pet him much either. I feel repulsive to all things at the moment. I feel #Depression creeping in again.


    Other pain decreases during migraine cycles?

    Has anyone else had similar experiences? During a migraine cycle (consecutive weeks when I have 1+ migraines each week), I notice my joint pain (Hypermobility) and even my TMJ pain ‘improves’, both in the long-term and directly before a migraine. The pain then goes back to normal after a migraine/after a migraine cycle. This is slightly bewildering me at the moment - have NO idea why this is and was wondering whether anyone had any similar experiences?? Thank you so much!! Sending hugs to everyone from Australia!
    #Hypermobility #EhlersDanlosSyndrome #TemporomandibularJointDisorders #ChronicIllness #ChronicFatigue #HEDS #hypermobileehlers-DanlosSyndrome(hEDS)


    Braces, Wraps, and Physical Supports - Any Recommendations?

    Recently on the recommendation of a friend I got a pair of Mueller thumb stabilizers to wear while driving so that the wheel doesn't torque my thumbs out of their sockets due to my joint hypermobility syndrome. They have made a world of difference!

    Now I am thinking a lot about other means of achieving a sense of physical stability using external aids. I realized today that I have been unconsciously using things like shapewear to help mitigate the constant feeling that my body is coming apart at the seams, and back when I was still dressing up to go out I often wore corsets because they made my back feel supported. (My grandmother wore a back brace for all the years I knew her, which makes me wonder if I inherited this condition from her.)

    I'm wondering if anyone else is using things like shapewear, compression wear, weighted blankets, wraps, splints, stabilizers, braces, or other physical items on a daily basis to get that feeling of stability and holding your body together, and if so, what do you recommend? #Hypermobility #JHS #joints #Support #stability

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    What media has helped you in your journey with Ehlers-Danlos syndrome?

    Living with EDS often means that we have to become experts on our condition. There aren't a lot of resources out there on EDS and the conditions commonly associated with it. While we are able to learn from each other and discuss our experiences in communities like the one here on The Mighty, it's easy to feel pretty lonely and lost while dealing with a rare condition.

    So, Mighty zebras, we want to know what books, TV shows, movies, YouTube videos, TikToks, podcasts, video games, or any other type of media has taught you about EDS or made you feel seen and less alone. What do you wish you had read, seen, heard, or played right after you were diagnosed (or on your diagnostic journey)?

    Your answer may be used in a Mighty story!

    #EhlersDanlosSyndrome #EDS #POTS #Gastroparesis #MCAS #Hypermobility #hypermobilityspectrumdisorder #SmallFiberNeuropathy #Migraine #CheckInWithMe


    Mild Hypermobility

    I'm curious to know how many other people who follow this hashtag have a milder form of hypermobility that doesn't necessarily meet the criteria for EDS? I have had recurring subluxations in both of my knees since I was 8 (I remember the first time very vividly) and as an adult I've had a few subluxations of my elbow, mostly the left. #Hypermobility


    Best Walker/Rollator for EDS

    I've been having a lot of trouble walking without mobility aids recently. I have platform crutches that I use all the time and love, but they're a bit bulky. We have several weddings we're going to be traveling for in the near future. I'm thinking about getting a rollator, but I'm not really sure what to look for. Recommendations?

    #Hypermobility #HEDS #EhlersDanlosSyndrome

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    Bawling in gratitude & renewed hope! Cement being laid today for accessible ramp, so when my health is bad, I can finally leave on my own on my scooter! Seriously, this extra independence is so needed!!!!!
    #EDS #Hypermobility #createmyownworld


    Tampa Bay EDS Dr Search

    I live in the Tampa Bay Area and have been completely disappointed with every doctor I have come in contact with from PCP to OBGYN to GI to Rheumatologist. Does anyone have any doctors in the area that specialize in EDS, preferably hEDS? #Hypermobility #hypermobile #EhlersDanlosSyndrome #ChronicIllnessEDS #hypermobileehlers-DanlosSyndrome(hEDS) #HEDS #healthadvocate


    Has anyone had success with the Mirena/progestin IUD ?

    I have historically had problems with increased joint laxity and pain when using progesterone only contraceptives such as the mini pill or Implanon. However, I have recently been recommended the Mirena because the level of progestin is lower and so apparently it "might be better."

    I am very feeling very cautious/skeptical of this suggestion due to the fact that insertion and removal aren't exactly a walk in the park, and I've heard a lot of negative stories about it. I was wondering if anyone else with EDS/HSD has actually had success with it?

    Many thanks xx
    #EDS #HSD #Hypermobility