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    What’s been your experience with patient advocates?

    Navigating the health care system when you have a condition like EDS can be challenging and overwhelming sometimes, especially when met with others who aren’t as knowledgeable about what it’s like to live with your diagnosis.

    But sometimes, seeking assistance from patient advocates who are educated and willing to put in work to get you the help and treatment you need is invaluable.

    What have your experiences been like with patient advocates? Did you find one that was helpful to you?

    ✅ Want some insight from a personal experience? Check out what ChristieCox has to say in recent Mighty article here: themighty.com/topic/ehlers-danlos-syndrome/find-hypermobile-...

    #EhlersDanlosSyndrome #RareDisease #Hypermobility #EhlersDanlosSociety #ChronicIllnessEDS
    #HypermobileTypeEDS #ChronicIllness #ChronicPain #Spoonie #Fibromyalgia
    #MentalHealth #Anxiety #Depression

    2 reactions 2 comments

    Finally Got a Diagnosis

    I have been in constant pain for over 8 years. I have gone through an insane amount of doctors and specialists to find out what was wrong with me. Medical test after medical test came back negative, and I was told over and over again that nothing was wrong or that they did not know what was wrong. I got diagnosed with things that had nothing to do with the pain I was experiencing. Meanwhile my pain worsened, and I started getting even more symptoms. The amount of times doctors did not take me seriously, or told me it was because of my anxiety, or told me to just exercise, or told me it was just growing pains, happened over and over again. I tried physiotherapy, psychotherapy, diets, I did everything they told me to and my pain just got worse. I decided to do my own research, something doctors say not to do, but something you have to do when every doctor you have gone to for years has no idea what is wrong. And I found out about EDS and hypermobility, rare disorders that are severely under diagnosed due to the lack of awareness people have of them. I saw that I have many of the symptoms, so I brought this to my doctor’s attention and he referred me to an EDS clinic. A clinic with a two year wait list. I had lost hope by the time my appointment came around. They were going to tell me I do not have it and I just have to continue trying to cope with this awful pain without knowing what is causing it. Years were spent questioning my sanity, questioning if I’m just making it up or being sensitive somehow. So I braced myself for the same answer I had gotten so many times before. Then I was told I have Hypermobile Spectrum Disorder, or Joint Hypermobility Syndrome. I did not take it in fully at first. I thought maybe they had looked at the wrong chart and it was a mistake, but it wasn’t. And I am actually going to get proper help and treatment. It is such an amazing feeling to finally have a diagnosis, to finally get proper help, but at the same time I feel frustrated. Frustrated that it took this long, frustrated that so many doctors did not take me seriously, frustrated at how many years I could have spent doing the right treatment if I had just been diagnosed earlier. I have seen so many similar stories about people with chronic pain and it makes me angry how many people have experienced and are experiencing things like this. I hope more awareness can be spread about this issue. #JointHypermobilitySyndrome #ChronicIllness #ChronicPain #Hypermobility

    19 reactions 8 comments
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    🩻 I’m back! 🩻

    Sorry, I’ve been a bit absent recently! I hope you didn’t think I’d forgotten about you all? You’ll be glad to hear that my chiropractor fixed me so now I’m back (pun intended 🩻🤗🤣)!! My body may be held together by Kinesiology Tape but it helps when you can have some fun with it! 🤷🏻‍♀️😂 I’d be lost, in agony, and falling apart, without my amazing chiropractor!!
    #functionneurologicaldisorder #FND #fndwarrior #fndaware #fndhope #fndhopeuk #fndaction #FNDAwareness #JointHypermobilitySyndrome #Hypermobility #HypermobilitySyndrome #HypermobilityWarrior #JointPainWarrior #Jointpain #JointPainRelief #JointHypermobilityAwareness #ChronicFatigue #EhlersDanlosSyndrome
    #ChronicPain #Chronicpainwarrior #ChronicPainRelief #ChronicHeadaches #ChronicMigraines #chronic #ChronicIllness #Painrelief #chiropractic #chiropracticadjustment #dryneedling #dryneedlingtherapy #Acupuncture #kinesiologytape #kinesiology #kinesiologytaping #ktaping #ktaped #SpoonTheory #Spoonie #SpoonieProblems

    10 reactions 12 comments
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    More questions #CervicalInstability #ChronicIllnessEDS

    Anyone know anything about straightening of cervical lordosis just got a CTA report back but don't go to my drs till the end of the month i need information to keep my brain happy #EhlersDanlosSyndrome #Hypermobility

    1 reaction
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    Have you found any books, shows, or movies that portray EDS well?

    Unfortunately, depictions of EDS in the media are rare, and are not always accurate.

    We’ve heard from our community how frustrating it is to see media perpetuating harmful or misleading stereotypes ("you’re so bendy!"), or how isolating it can be to not feel represented at all.

    Have you found any accurate or validating portrayals of EDS (whether in books, shows, movies, etc.)? Share with us below.

    #EhlersDanlosSyndrome #RareDisease #Hypermobility
    #HypermobileTypeEDS #ChronicIllness #ChronicPain #Spoonie #Fibromyalgia
    #MentalHealth #Anxiety #Depression

    5 reactions 6 comments
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    Need a hack #Surgery #ChronicIllnessEDS #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #Hypermobility

    Hello all I am in need of some hacks I had surgery on my ankle. I am in need of a shower or sort of shower. Waking up drenched in sweat from from pain is making going many days without a shower hard and making me feel worse overall . I tried sitting on bath stool with my leg out to avoid getting wet but that just messed up more joints and took what little energy I had for the day. Any one have any good waterless soap or shampoo they like, dry shampoo only works for so long and just makes my hair feel gross and tangles. Walmart or Amazon links would be amazing thanks kitty attention (turtle) #MightyPets

    9 reactions 3 comments

    Diagnosis finally!

    I've been diagnosed with hypermobility spectrum disorder very recently. I'm currently trying to process everything and work out what help I need to go back to the rheumatology team in January. I've had symptoms since I was a child but I've been really struggling with pain in my hands and feet particularly in the morning. I've had this for over a year now and been going back and forth with doctors until I finally got to see a GP who referred me for every blood test she could think of and referred me to rheumatology and cardiology to cover all the bases. I'd be interested if anyone has tips on exercises or pain management. I'd love to get fit again but the pain next day just makes it unbearable. #hypermobilityspectrumdisorder #JointHypermobilitySyndrome #Hypermobility #PainManagement #Pain #Exercise

    1 reaction 3 comments

    New here 👋

    Hi, my name is KLeigh Cat. I've been recently diagnosed with fibromyalgia and hypermobility spectrum disorder. All of my random quirks and seemingly unrelated health issues suddenly make so much sense! #Hypermobility #Fibromyalgia #ChronicPain

    7 reactions 2 comments
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    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

    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