Ehlers danlos syndrome and weight loss

  • Hi all

    I'd just like to give a positive for anyone with a chronic health condition that needs to lose weight.

    I have put on weight and lost it several times over. I put it on because I'm stupid and I comfort eat. I end up eating badly because of chronic pain. I use the binge eating as a coping method. This is wrong I know and the resulting weight gain that has happened all my life has had rebound effects and made my pain worse to a point where I have no choice but to switch my coping method to something else and lose the weight.

    For me I can not exercise as in dancing around or going to a gym. Im not even allowed to go to the swimming pool. All I can do is a very slow and short walk whenever I can. But I want to just let people know that even though this is all I can do, with the correct healthy diet my weight falls off regardless. As my weight falls off I find that I can walk a bit further so it has a snowball effect and more weight comes off.

    I find I have to restrict my calories to around 1200 -1500. I also don't strictly count those calories either or else I'd go demented. I just do a rough count and mainly eat lots of veg. I mean LOTS. I also eat only chicken and fish along with quorn. Of course i have rice and pasta...and I love salads.

    Drinking around 3 litres of water per day is a must too.

    My snacks become fruit. Bananas help with the sugar cravings at first when I quit the sugar.

    Hope this helps to keep those of you that can't exercise much, positive. A nice gentle walk whenever you can is a good start and if that's all you can manage (like me) you can still lose the weight. It does come off.

    Fraz
  • Sounds like a good plan good for you. I wish you the best.
  • Eds and weight
    I have gained significant weight due to the inability to do cardiovascular exercise due to eds. Exercise intolerance is one of the hallmarks of the dx. It is frustrating on so many levels.

    My sister also has eds type iii and she did bariatric surgery. I am considering this but having difficulty getting insurance to pay even though I have letters of medical necessity and comorbidities of hypothyroidism and arthritis.

    I'm looking for abstracts or something to submit to is insurance. Please
    Share.
  • Lang, abstracts of scientific articles outlining the difficulty with losing weight with EDS III? I have it too, and have been told I am the "outsider" as "usually EDS III patients are very skinny!" Ugh. Anyway, I may be able to help if you can give me more info. Please feel free to pm me what you're looking for!