Ehlers-Danlos Syndrome

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  • insearchofbees
    insearchofbees Posts: 28
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    I also have EDS hypermobility type.
  • rachthemidwife
    rachthemidwife Posts: 7 Member
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    Hi. I am 51 and have EDS hypermobility type. I'm a UK lass and the top guy is based at UCLH (University College of London Hospital). HIs name is Professor Rodney Graham and I asked my GP for a referral. He also saw my elderly mother (able to put her feet behind her head at 78!!) I need to manage my weight to help avoid mitral valve prolapse (my mum popped her mitral valve and needed open heart surgery) and to protect my ageing joints. Biggest challenge to losing weight? Unable to lift weights. I swim as this is the only type of resistance training that my joints can cope with and I still injure myself pretty regularly. Also, as is so common with EDS, I don't handle blood sugar changes very well. I have moved over to following IPOARM philosophy and it is so much better for me. My blood sugar is more stable and I exercise when I am able. Is anyone else with EDS following IPOARM without doing the whole "lifting heavy" milarkey?
  • abegraft
    abegraft Posts: 1
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    I can't believe I found this! I need to get my fitness pal back on my phone and stick with it! I have Hypermobility type and so does my father. He is 54 and I am 24. I am also 5'6 and weigh around 175lb. I have had 9 surgeries to correct my looseness from EDS and then 1 because of a umbilical hernia removal. My first surgery was 10 years ago. I never really had a weight problem in high school between surgeries, but after HS I have gained so much weight. When I graduated I weighed 130lb. I have had 1 surgery a year since then and I cannot lose the weight or when I start to I need to get another surgery and it kills me. I need to lose the weight to make it easier on my joints.

    I have no idea where to start when it comes to diet cause I also get chronic migraines and I need to avoid certain things that people would include in a "diet". I am pretty okay when it comes to exercise but it doesnt seem to be enough.

    any suggestions at all would be so wonderful! I would be more appreciative than I can ever put into words!

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