hEDS

Join the Conversation on
hEDS
2.8K people
0 stories
314 posts
  • Explore Our Newsletters
  • What's New in hEDS
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post

    Trying to Keep Doing What I Love

    Hi all, I’ve come to terms with some of the things I’ve lost from my life due to worsening symptoms from hEDS - no more knitting, no more playing the oboe (devastating), only very limited and careful hiking, that sort of thing. Not easily being able to cook for myself has been too much of a problem. Prepared foods and takeout have too much salt, and my body reacts terribly to salt. I blow up like a balloon. Also I need to avoid peppers and include more whole grains, and I was always a good cook and I miss my yummy food. It’s hard to stand up because the hip I dislocated 20 years ago aches, and my shoulders and hands object to stirring.

    My question - are there any hypermobile cooks out there who have found less painful and more possible ways to work in the kitchen? Can you share you tips and tricks please?
    #HEDS #kitchenhacks #Cooking

    1 reaction
    Post
    See full photo

    3AM Heating Pad Date #Painsomnia #Hypermobility #Endometriosis #EhlersDanlosSyndrome #HEDS #Arthritis

    The upside to having painsomnia at 3AM is that you have 8 different heating pad/devices to choose from. The downside is everything else.

    11 reactions 5 comments
    Post
    See full photo

    how to start the process of getting evaluated for hEDS?

    hi! i'm 23 and have hyperadregenic POTS as well as IBS-C. i've been doing a lot of research over the last couple years and am seriously wondering if i have undiagnosed hEDS. it apparently runs in my family (i just found this out recently) but isn't officially diagnosed, even though it's blaringly obvious. i have a lot of the symptoms and have since i was very little: easy dislocations, constant subluxations and hyperextension injuries, hypermobility in my fingers, my knees are naturally hyperextended, my skin is very fragile and bruises and scars extremely easily, constant headaches/jawaches/chronic joint pain, chronic fatigue, POTS, GI issues, etc. the only thing that makes me question it is because my skin isn't unnaturally stretchy and not all of my joints are super hypermobile. idk how to even go about asking my doctor-- out of fear that i'll be dismissed. what did you all do when you first suspected it? what was your experience like with getting diagnosed, what helps you to manage (i use that word loosely) symptoms, what specialist(s) do you see? #HEDS #hypermobileehlers-DanlosSyndrome(hEDS) #PosturalOrthostaticTachycardiaSyndrome #hyperadrenergicpots #IrritableBowelSyndromeIBS

    Post

    What is everyone's favorite electrolyte supplement!?

    Just got my official HSD, Dysautonomia, and MCA diagnosis. I have been doing well with my water intake but the dr. Informed me that I need to be drinking between 65 to 128oz a day and half of that needs some kind of electrolytes added to it. #electrolytes #HSD #HEDS #help

    8 reactions 10 comments
    Post
    See full photo

    Thoughts...

    There I am... On my bed... In the fetal position again.
    My fingers covering my face as tears run into my palms from the pain erupting in every muscle, tendon, and bone in my body.
    The pain is nothing new... I'm used to it, but then there's this pain... That hits every area at once and reminds me of how bad it can really get.
    Then I start thinking about the future... How much worse it will get with age... All the surgeries ahead of me...
    And the hopelessness comes rushing in... The frustration... The feelings of zero self worth.
    Where is my place in a society that places your value on what your physical health?
    I'm lost tonight... Caught in a cycle of dread and grief. Dread for what lies ahead and grief for what I've lost of myself so far.
    And I wish I had someone to wrap their arms around me as I release this anguish... But the stress of companionship seems to outweigh the joy.
    Who wants someone who cancels more than they show up? Someone who's always exhausted and constantly in pain?
    Just thinking of it exhausts me.
    For now... It seems easier to lie here... With my pain and bear it on my own.
    #EhlersDanlosSyndrome #HEDS #Hypophosphatasia #softbones #MyalgicEncephalomyelitis #OrthostaticHypotension #Osteoarthritis #RareDisease #GeneticDisorder #BipolarDisorder #ComplexPosttraumaticStressDisorder

    2 reactions 7 comments
    Post

    Enjoying a Break

    The colitis I live with is labeled lymphasidic. By any name Colitis is a difficult diagnosis. It comes and goes at will, leaving my life shredded and my body devastated each time I get a flare up. With all my hEDS conditions added together, colitis, when I'm in a flare can overwhelm them all. It causes balance of any kind to disappear while I beat a trail like a crippled racehorse to the facilities. It's truly horrible #InflammatoryBowelDiseaseIBD , #HEDS , #lymphocytic colitis

    2 comments
    Post

    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)

    9 comments
    Post
    See full photo

    #HEDS # deformed feet….hands d/t loss of connective tissue, #generalized Anxiety Syndrome #Percocet addiction #Poor outcome surgeries

    Is there a way to communicate when I can no use fingers to text?

    2 reactions 4 comments
    Post

    Lucky

    Every morning when I don't want to get out of bed (I have 20 conditions), I have to tell myself over & over, how LUCKY I am to still be alive. #HEDS #addisons #fibromyalga #indwellingcatheter #LungDisease #boweldisease
    #svt #thyroidfailure #anaemia #Photophobia #Cataracts #SjogrensSyndrome #BreastCancer #metabolicmyopathy #fibromyalga TMD/TMJ etc....

    1 comment
    Post
    See full photo

    State of Unbelief… #FND ? #nowayihavethat !

    Hi! 😃💜💜
    I’m new to the group!

    Hope all of you are having a good day today! 😊💟

    As the title states… I did NOT believe it when I received the #FNDdiagnosis !

    I’m still having trouble grasping my neuros assessment of all my conditions & symptoms!….

    Since I’ve been dealing with ALL my NEURO health issues since 2013 & she just met me last year!

    — Can’t stand narrow minded tunnel vision non proactive & non helpful doctors! — #timetochangeneuros
    #sotiredofthiscrap

    Anybody else try to “forget” all their diagnosis ON THE DAILY??!!
    — because it’s just too overwhelming & creates anxiety?

    Anyway…
    I try most days to push myself beyond the EXTREME pain & numerous symptoms & focus on ANYTHING ELSE to take my mind off my daily struggles & I’m sure you ALL do some of the same things!

    — That’s it! lol 😜😎🥰

    I hope each of you find JOY in your lives DAILY!😁😘

    #timetorest
    #HEDS #POTS #IIH #RheumatoidArthritis #DevicsDisease #wheelchairbound4x #OpticNeuritis #DoubleVision
    #triplevision
    #PCOS
    #temporalpallorandscotomas
    #GERD
    #gastreoparesisSUCKS !! #PituitaryTumor #Diabetes #HBP #Asthma #COPD
    #Anxiety #Depression #NeurogenicBladder #chronicUTIS #KidneyStones #toomanypillstotake !
    #toomanydiagnosis !
    #FOCUSONLIVINGLIFE !

    GOD BLESS AND HELP US ALL!!💜❤️💗😇

    3 comments