Ehlers-Danlos Syndrome Awareness Month

Join the Conversation on
Ehlers-Danlos Syndrome Awareness Month
1.8K people
0 stories
13 posts
  • Explore Our Newsletters
  • What's New in Ehlers-Danlos Syndrome Awareness Month
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post

    After some advice please

    For quite a while now I've been having dizziness with almost like a seizure at the same time. I'm totally aware of what's happening when it happens but my body and limbs shake quite violently. Doc sent me for a brain MRI and all seems normal. Has anyone else experienced this? Any ideas on what it could be?
    #EhlersDanlosSyndromeAwarenessMonth #EhlersDanlosSyndrome #HypermobileTypeEDS

    2 reactions 13 comments
    Post

    "How Are (Really) Feeling?#ChronicPain #EhlersDanlosSociety #Myositis ,

    Yes, you !

    One thing, one Really Big LittleThing, that I said, starting as a child, was (when asked how I felt?)

    (pick just one,)

    "Oh,....
    -not too bad
    or:
    -ok
    -a little sore
    -kind of tired
    -having tummy trouble
    a little sleepy,

    And then, I always said, "and how are you"?
    I turned it back.
    (because having attention focused on me, gave me anxiety). Why?

    My Momma had made it painfully clear, just how aggravated she was when I was sick or home from school. I was sick a lot, especially from 1st to 9th grade. Streph, EBS, Bronchitis, Allergies, Colds. Aches, sprains, broken bones. She also hated driving, and Drs., So I was usually treated by a phone call, and an RX for Amoxicillin.

    I always cared more for others, and I really wanted to be happy, active, an asset, loved, appreciated.

    But, my mistake was that of being afraid to push others away if I were to be negative, or honest, about how I was.

    That little habit turned out to spite me, by making me "sound" stronger or healthier mentally and physically, than I really was.
    People wanted to be released from having to care about it.

    So, when I started needing those same people to hear me, to realize that I felt worse, or my condition was/is really serious, they found it hard to process.

    All my years of saying, "I'm Okay", had Brainwashed them into refusing to think that I was not "Okay, or Just Fine, or Well Enough". So, Then, when I did limp, or crash, I felt like they saw me crying wolf! Poor Me!

    My desire to make things easier for everyone else, cost me my family, and my nice life. Because for 25 years I've been increasingly deteriorating, but they don't have time, anymore, or compassion, or empathy, to see how much I truly need them.

    Don't Sugarcoat your feelings. If they seem too sharp to share; If you can't get the right thoughts out, try writing them as letters, or using a journal that you could share, at times. Stick up for yourself!

    And there may be times where you have to call your problem, an "8-9", instead of a "3-4", so they sit/get up or notice, you Really need help. You really Deserve it! So do I.
    #EhlersDanlosSyndromeAwarenessMonth
    #EhlersDanlosSyndrome
    #ChronicPain
    #Dermamyositis
    #Polymyositis
    #MixedConnectiveTissueDisor -ders
    #Fibromyalgia
    #sjogrens
    #Anxiety

    3 comments
    Post
    See full photo

    Ehlers-Danlos Syndrome Awareness Month #EhlersDanlosSyndrome #EhlersDanlosSyndromeAwarenessMonth #EDSAwareness

    May is EDS awareness month. I’ve never not been in pain and I’ve never not had health issues but these last few years have been particularly hard. Receiving an ehlers-danlos syndrome diagnosis made so much sense and was so validating after years of not k owing what was going on. This genetic disorder affects every system in my body as every system in the body needs it’s connective tissue to work properly and mine is faulty. Each person’s EDS story can vary considerably as we can all be affected differently. The major surgery I had 1/9/20 was EDS related and now I’ll be having another major surgery this year, again EDS related and also from complications from the previous surgery and some other kind of scary issues going on that maybe I’ll discuss at another time. For now I’m just spreading some EDS awareness for EDS awareness month. For me EDS has really done a number on my internal organs and the structures that support them, also my joints love to dislocate and subluxate especially my hips, sacroiliac joint, and ribs, I’ve torn ligaments, had several internal and external hernias, and have several conditions related to having EDS, the list goes on and on. It affects me mentally and physically every day of my life. So here’s to all the EDS warriors out there, “our bodies may be fragile but our spirits are unbreakable.”-not sure who wrote this quote but it’s perfect so I had to use it.

    1 comment
    Post

    Hi guys my friend is wanting to know if we're at risk to go out I thought yes


    #EhlersDanlosSyndromeAwarenessMonth

    2 comments
    Post


    #MightyPoets

    Indescribable, unimaginable, and completely not ok.
    How I’ve gone from where I was back then to where I am today.
    Nothing can distract me from the pain that just won’t cease
    Intermittent bits of happiness are just not enough release.

    But I’ll just keep on going and pretend there’s nothing I’d prefer
    And feign contentment while longing still for a life that doesn’t hurt.
    And I’ll get dressed each morning, play the role, & paint my face.
    While I work so hard to hold back tears from streaming down my face.

    Held captive inside my own body I am begging for reprieve
    From the judging damning eyes who say “you look just fine to me.”

    #EhlersDanlosSyndromeAwarenessMonth #ChronicPain
    #Fibromyalgia #ChronicFatigue #Migraine #PeripheralNeuropathy #Insomnia #recovering athlete
    #EhlersDanlosSyndrome #ChronicIllness

    7 comments
    Post

    Spinal csf leak #SpinalCSFLeak #EhlersDanlosSyndromeAwarenessMonth #EhlersDanlosSyndrome

    I just found out that my surgery for my spinal csf leak and tlif for my ruptured disc that was going to be September 10 just got moved up to August 6. I’m so happy but also so nervous! I’ve been so miserable because the headaches have been so awful! Anyone had this done before? Last time my recovery was awful I hope this time is better! They said I might have to stay flat for like 3 days anyone know why??

    1 comment
    Post

    Anyone get a diagnosis of “familial articular hypermobility?” How is it different from hEDS?? #HypermobilitySyndrome #HEDS #EhlersDanlosSyndromeAwarenessMonth #EhlersDanlosSyndrome

    2 comments
    Post
    See full photo

    There’s a stranger in my mirror.

    I took this picture the other day but I’m just now getting up the courage to post it. I had looked in the mirror and barely recognized myself with all the contraptions keeps my joints in place. I’ve been diagnosed with Fibromyalgia and Hypermobile Ehlers-Danlos Syndrome.

    From top to bottom I have.., a nightguard to keep me from grinding my teeth and dislocating my jaw.

    Next is my foam cervical neck collar. This is a cheap foam one I got off of Amazon. I had anterior cervical discectomy and fusion in my neck almost 3 years ago and have had chronic pain ever since. I wear it at home almost all the time in an attempt to correct my posture and encourage traction.

    Then finally my trusty sacroiliac belt which (attempts) to keep my hips in place. #ChiariMalformation

    I’m just going to say it. This blows.

    #EhlersDanlosSyndrome #Fibromyalgia #EhlersDanlosSyndromeAwarenessMonth #JointHypermobilitySyndrome #SpinalStenosis #CervicalRadiculopathy #TemporomandibularJointDisorders #ChronicPain

    23 comments