Ehlers-Danlos Syndrome

This topic contains 5 replies, has 4 voices, and was last updated by Profile photo of FredFriend FredFriend 3 months, 1 week ago.

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  • #51037
    Profile photo of Snow
    Snowtgrr
    Participant

    Hi all,

    I have Ehlers-Danlos Syndrome Type 3. That is the one where all of my joints become dislocated at different or same times. We are rated on the Beighton scale which goes up to 9:9. When I met with my Medical Geneticist she wanted to give me a 12:9 since I was the worst case she had seen in the last 30 years. Of course that was after I put her hand on my right hip and instantly dislocated and relocated my right hip. No pain. Then I offered to show he the rest of my body that way. She quickly declined the offer stating she believed me.

    So now I seem to be on a downward spiral as I age and am wondering when the pain and spiral will stop. I gotta live life. I don’t know what else to do. So for now I take my Forteo and garden to keep my muscles strong. Well my family calls it Urban Farming. I call it just gardening.

    I hope to connect with more EDS 3 patients as well as Dr’s. Let me know how it fares for you.

    Snow

  • #51374
    Profile photo of TPC_YaYa
    TPC_YaYa
    Moderator

    Hello Snow,

    Thank you for sharing your pain journey with us. Gardening can be relaxing and as you said help keep our muscles strong. I enjoyed working in my many flower gardens over the years.

    I would like to share with you that we have live hosted chats here on the website
    every Monday-Wednesday-Friday at 11:00am ET. We have an evening chat on Thursday’s at 7:30pm ET.

    We also have our Outreach Support Conference calls 4 times a month on Tuesday’s. The time varies each week.
    September’s calls are on the following Tuesday’s.

    September 13: 7:00-8:00 pm ET
    September 20: 1:00-2:00 pm ET
    September 27: 7:00-8:00 pm ET

    Call in number: 712-775-7031 Passcode: 491-268-096 and press the # key.

    You do not have to register for calls and all calls are open discussion so everyone can share if they like.

    You can read more about the calls at this link; http://paincommunity.org/tpc-outreach-support-conference-calls/

    Take care,

    TPC_YaYa
    TPC Community Moderator

    “The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”

  • #51454
    Profile photo of FredFriend
    FredFriend
    Participant

    Welcome Snow,

    I too have Hypermobility Type Ehlers-Danlos syndrome.

    Finding the joy in each moment and my mantra “Keep moving forward” are at the top of my list of how to cope with the torturous pain. In some ways aging has made it worse and in others I think aging makes it better.

    As I age (I’m over 50) I’m less fearful and less guarded so the muscles are less frequently subjected to tensing due to stress or fear which I believe leads to a more relaxed (but not too relaxed or I’ll collapse into a puddle of a person – you know how it is) approach.

    Walking, gardening and a couple of hours of specific exercises each day keep the muscles toned just enough to hold me up. Also in the mix are kinesio tape, TENS unit, diet management, sleep management, distraction, cuddles with my beagle, love from friends and family, writing, acupuncture, massage, epsom salt baths, heat/ice therapy, modified yoga, modified pilates, acceptance, cane/wheelchair/walker, splints… to name a few things in my pain management toolbox.

    Welcome to PainCommunity.org!

    I look forward to getting to know you and learning about what you grow in your garden.

    FF

  • #61691
    Profile photo of ToebeanS
    ToebeanS
    Participant

    Hi Snowtgrr and FredFriend! It’s always nice, to me, to run into others with Ehlers Danlos Hypermobility Type. Not that I’d wish this on anyone, but it is comforting to know I’m not the only fighting this thing. *Gentle Zebra nuzzles*

  • #61699
    Profile photo of TPC_YaYa
    TPC_YaYa
    Moderator

    Hi ToebeanS,

    Welcome to The Pain Community discussion forums we are happy to meet you. We would like to invite you to check out our live hosted chats, Monday-Wednesday-Friday at 11am ET. The chat room is located under the “community” tab at the top of this page.

    We also offer Outreach Support calls 4 times a month on Tuesday’s.

    The call in info: Call in number: 712-775-7031 Passcode: 491-268-096 and press the # key.

    Our next call is tomorrow, March 14th at 7pm ET, 6pm CT, 5pm MT and 4pm PT.

    The calls are open discussion so all can join in on the conversation if they wish. You can also call in and just listen if you like. Below is the link with all the info.

    TPC Outreach Support Conference Calls

    We hope you give the chats or calls a try.

    Take care,

    TPC_YaYa
    TPC Community Moderator

    “The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”

  • #61709
    Profile photo of FredFriend
    FredFriend
    Participant

    Welcome ToebeanS!
    I hope that you look around the site and explore all of the great resources, references and blogs that are housed here. It is an amazingly supportive and informative group.
    Hope to run into you again here soon.
    FredFriend

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