Just found this group!

linnellal
linnellal Posts: 49 Member
edited November 29 in Social Groups
Am I a happy girl or what? My name is Anna, I'm 52, and I have Ehlers-Danlos Syndrome which is a genetic disorder of the connective tissues. We are the one's that you would call double jointed, but it's really bad for us to demonstrate because it stretches out our tendons and ligaments that much farther. EDS comes with Chronic pain and chronic fatique. Our joints frequently pop out of sockets and then relocate when they feel they've had enough. So it is difficult to find a balance of activity vs. rest. I also take quite a few medications that are not nice to my metabolism so taking off weight is very difficult. I'm looking for support and looking to give support to those in need. We're all in this together, right? Looking forward to meeting all of you.

Replies

  • star1407
    star1407 Posts: 588 Member
    Hi, nice to meet you. I have fibromyalgia and other stuff that causes pain and fatigue.
    We all have different things here but we're all doing our best.
    Where are you from? I'm in the uk, in Essex.

    I've got a walking thread called just walking, quite a few people are commenting and sharing photos of their walks. It's in the fitness section if you are interested.
    Look forward to chatting x
  • linnellal
    linnellal Posts: 49 Member
    I'm from Decorah, Iowa in the States. It's a very small town. I actually lived in Cambridge when I was 7 for a year. I have lovely memories of going to school there.

    I haven't been doing much walking. I injured my knee last July and have been on crutches ever since. I am starting physical therapy tomorrow mainly for my shoulders. All the use of crutches have had a negative impact on my shoulders. I have an MRI scheduled for tomorrow and then the doctors at the Mayo Clinic will take a look and see if they can figure out what is actually wrong with the knee. I'm hoping to be walking sometime this spring. It's hard to lose weight and tone up when you can't move your lower body very well.
  • star1407
    star1407 Posts: 588 Member
    Hope you get some answers about your knee. I so understand the shoulder pain caused by the crutches, I try not to use my sticks unless I really need them. I find any bit of tension goes straight to my shoulders and fills them with knots.
    Don't worry about not exercising, Weight loss is entirely down to calories. There are a couple of people in the success stories section who are wheelchair bound and have lost huge amounts of weight. Very inspiring
  • linnellal
    linnellal Posts: 49 Member
    That is so encouraging to hear. I worry sometimes that I'm not moving enough. And it just puts more stress on me. I go to get my MRI of my knee today and also go to my first physical therapy appointment today too. We'll see what they have to tell me.
  • star1407
    star1407 Posts: 588 Member
    Honey relax, I have weeks where I'm bedridden or in a wheelchair and I'm still losing. I've put the scales away as I get too fixated, but I'm monitoring my measurements and clothes fit. I can't wear my favourite jeans without a belt and pretty soon I'll have to chuck them for a size down. I'm in a size down knickers as my bigger set were falling down :D
  • star1407
    star1407 Posts: 588 Member
    Hit send too early lol, I also wanted to say keep us updated on how you get on. You're welcome to friend me x
  • KarlaYP
    KarlaYP Posts: 4,436 Member
    The way the medical community points the finger at us, blaming us for being overweight, telling us that if we directed, and exercised, all of our problems would be fixed! Many, like me, aren't able to exercise without terrible pain, but they don't want to hear that! They just want to blame us, instead of looking at their advice that's led to the problems!

    Approximately thirty years ago our government really began to push the low fat diet. When they did, they replaced the fat with sugar, to keep food tasting good enough to eat. Well, can you see the diabetes, and obesity epidemic we are facing here in the U.S. and in other countries too? It's because of the sugar they added to our diets! How many of us have tried to eat low fat diets, and just starve the whole time (raising my hand here!)? This hungries comes from the continued onslaught of sugar! It causes an insulin reaction after eating, then the blood sugar drops from the insulin spike, and within an hour or two, we are hungry again, so we eat more sugar.....becomes a vicious cycle. People say they are afraid of fat, but imo we should be very afraid of sugar! Look at the carbohydrate counts on the packages of food you eat! For those that don't know, carbs are a form of sugar, and they can affect your body just like regular sugar! Know what you're putting in your body and how it affects you!

    Eating fat is what the body needs to be healthy! Last year our U.S. government released the results of the Womens Health Initiative that was an research study done over a ten year period that showed that a low fat diet did nothing to reduce the incidence of heart disease! Eating a higher fat diet leads to the best satiety (you don't get hunger very often when eating it!) I've ever experienced! This leads to a natural reduction of the amount of food we eat, and leads to weight loss, without exercise (that we can't do, right?)!! Plus the decrease in sugar consumption can lead to wonderful pain relief! I'm in another group here, and there are a bunch of us that have seen drastic reduction in pain levels! There are far too many of us for it to be disputed and we want others to know about it too!!

    Best of luck!
  • linnellal
    linnellal Posts: 49 Member
    One of the things that I've been doing even before I started going to a nutritionist is to cut out all items with High Fructose Corn Syrup. It's everywhere. It's in Katsup, jelly, hot dogs, bread, crackers, cookies, breakfast cereal, and the list goes on. There is one brand of katsup that doesn't have it, I've found a brand of bagels that doesn't have it, a brand of Jelly, a brand of hot dogs.... we don't buy chips, cookies, or soda. High Fructose Corn Syrup is the killer of healthy America.
  • star1407
    star1407 Posts: 588 Member
    Yeah I try and avoid it. I much prefer fresh, natural foods
  • KarlaYP
    KarlaYP Posts: 4,436 Member
    What brand of ketchup is that @linnellal? I haven't been able to find one without the high fructose corn syrup (bffs). I'm sure I can order some online, but like to hear others reviews before purchasing. You are correct though! It is in everything that we are told is "good for us", when it's (imo) the most damaging substance in our food! What, if any, differences have you seen in your pain levels since cutting out hfcs?

    I'm with you too @star1407! Our bodies prefer fresh foods, rather than the processed (convenience) foods that have been recommended by the experts (I would like to see how much stock they own in the companies who make these foods!). Cooking your own food is the only way to know exactly what you're eating, and how it affects you.
  • linnellal
    linnellal Posts: 49 Member
    It's either hunts or heine I can't remember which but it is clearly marked on the label.
  • quzzdragon
    quzzdragon Posts: 140 Member
    I have a friend who has EDS and so do both her sisters. Her tendons are in better shape than her sisters, but it still affects her life in drastic ways. Sounds like you're doing some really good things for your body - PT, nutritionist, etc. And like @star1407 said - you can lose without pushing your body to move when it hurts. Listening to your body and loving yourself are the best things you can do for yourself. :)
  • linnellal
    linnellal Posts: 49 Member
    Wow. You don't come across many people who know others who have come across those with EDS. It's kind of rare. I hope your friend and her sisters are doing well. It's an uphill battle. I actually got approved for knee replacement surgery just the other day! It's a big deal. Once I have the new knee. I'm going to be able to do a lot more activity. My surgery in on April 29th. Almost 2 months away. I'll be watching the clock a lot and pinching myself to see if it is actually real. And May will be a month of rehab. And I'll be ready for activity just in time for summer!
  • quzzdragon
    quzzdragon Posts: 140 Member
    Wow, that's awesome! Best of luck with your surgery - keep us updated! :)

    My friend actually has the least sever case in her family. She has should dislocation mostly and sometimes her ribs pop out. During our first week of friendship (in college in the dorm rooms) she came to me and asked me to tape her ribs down. She's awesome though. She's a volunteer EMS (driver now) but because of her condition she's not allowed to lift anyone in case her shoulders pop out of their sockets. Her two sisters weren't as lucky unfortunately. Lots of days, her oldest sister is bedridden with pain and her school and career has struggled because of that. But they're all so strong, and it sounds like you are too! I'm glad you're not letting EDS control your life and your taking steps to be more in control.

    Keep up the great work!
  • katdanash
    katdanash Posts: 1,390 Member
    i just found this group, glad that i did. I have MCTD, a mix of symptoms for RA, lupus and scaladerma. It comes with pain, fatigue and is a auto immune disease . Every time they test my RA factor gets higher. Right now I am on minimal meds (thankfully) but i do get a lot of inflammation due to this . I just recently figured out that i am also diabetic. Ugh. I am eliminating high fructose corn syrup from our home. there is now a couple of ketchups that have not got it . Hunts and a new "simply Hienz" . it is so hard to eliminate, my husband has fatty liver disease and i would not be supersized if i did also. but we are working on it.
    Finding foods with out it , and that are low sodium or sodium free , turns a normal shopping trip into a nightmare.

  • VyannM
    VyannM Posts: 8 Member
    I'm not so sure how this reply works. I wanted to reply to the ketchup question. I'm in Canada and I know we have a ketchup made by French's that is free of the the high fructose corn syrup. I think it's the only one here that is big name brand.
  • caradack1985
    caradack1985 Posts: 254 Member
    Another EDS girl here, I actually know a fair few people with it! It can be hard to do exercise when you can't do high impact and just staying alive requires tremendous amounts of energy! Sometimes I dream about floating in jelly, because then I could rest completely with no pressure... Ah bliss!
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