Anyone else have Ehlers-Danlos Syndrome? Or similar?

JenniferDukes1991
JenniferDukes1991 Posts: 2 Member
in Motivation and Support
Hey!

I Have Ehlers-Danlos Syndrome type III. Can make it quite tough loosing weight with all the dislocations and hospital stays!! anyone else on here in a similar situation/ have a chronic illness? would be good to get in touch with people to share tips/ keep motivation up! :)

Replies

  • Elizabeth_Darcy
    Elizabeth_Darcy Posts: 44 Member
    Hi!

    I am one of the lucky 1 in 100k with Type 1 Gaucher's. I've been in the Rare Disease Club for about a year now. My treatment makes it a bit harder to lose weight since my body isn't working quite as hard to get the junk cleared out of my blood. No hospital visits for me, but I do get treatment every two weeks, which takes me out of the game for about a day.

    New friends are always good, even if we are a little broken sometimes. :)
  • willo78
    willo78 Posts: 25 Member
    :waves hello:

    Yep I'm another one with EDSIII and have just had to really have a stern talking to myself as I've let my way of life slip and consequently feel crap for it. So day one of a brand new start :-) I've found that by keeping up my medication regime and subscribing to the 5:2 way of life actually really suits me and I see good results with weight loss. I've just bought myself a new fitbit flex as this helps me with additional motivation too.

    Feel free to add me :-)
  • AzWifenMom
    AzWifenMom Posts: 26 Member
    Hi from Arizona!
    I also have Ehlers-Danlos Syndrome, and 30 surgeries later, I am still walking. It isn't fun, but it just part of me and I have accepted it but I will not let it take over me. I had a couple of really rough year between 2011 - 2013 and needless to say with stress the weight really came on. It also seemed like over the years with every surgery there was weigh put on and really no way to take it off at the time. I have been surgery free for about 5 years now, but I also have learned to know my limits and really, really be careful. I had to stop working in 99 because I was blowing out joint even at a sit down job. You know the thing, no repetitive motions.
    In 2014 something changed in my heart "spirit" and I knew I needed to make a change, so I have. I have lost over 15 pounds, slowly, but I have. I am working on my balance, because I am tired of falling down and hurting myself. I know I can't do the normal weight loss and workout routine, but I can be aware of what I eat and how much I move. Everyday for me is a NEW day and look for something NEW in it. Hang in there and you will start a journey on moment at a time, and enjoy that moment.
  • 2luvbuggs
    2luvbuggs Posts: 1 Member
    I have Ehlers Danlos Syndrome, Fibromyalgia, premature arthritis showed up on an MRI for my back, plus too many other diagnoses to list (caused by EDS genetic collagen defect).

    Glad you all have introduced yourselves. I feel so defeated but have committed to never quit trying to lose weight. I have gained 14 pounds in the last 5 months so need to lose that, plus a whole lot more.

    How are you all doing?
    Katy
  • Cathie111
    Cathie111 Posts: 8 Member
    hEDS here, as well. Just getting started on weight loss again.
  • mvorih3
    mvorih3 Posts: 4 Member
    Not EDS, but other connective tissue disorders- Psoriatic arthritis and scleroderma. My flairs and treatments bring a lot of gastric problems so staying consistent with diet it really hard. I just finished about 2 years of a lot of crisis and have been stable long enough I think I can t start working on diet/weight loss.

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