Diagnosed with EDS/Joint Hypermobility Syndrome and struggle to lose weight/tone, please help?

susanssig2
susanssig2 Posts: 1
in Health and Weight Loss
Hi

2 years ago I went on a healthy diet and ran for 40 to 60min a day, I lost quite a lot of weight after a month and soon after a running session I experienced a sharp excruciating pain in my right knee. I gave myself a few days rest and went to a shop to buy groceries and after walking throughout the shop, same feeling in my knee occurred. So for a couple of months I wasn't able to walk long distance or even run.

Just to clear things:
I'm very flexible and hypermobile, I also have a really flexible back and I am a dancer/gymnast. Really bad posture :neutral_face: I also have the right shoes, so shoes aren't the problem.

Last year I was diagnosed with Joint Hypermobility syndrome and she told me that I need to fix my posture by sitting and standing up straight and activating my core at all times. She also advised me to strengthen my core and she showed me a few exercises to do this. So a year past and i've been concentrating on core strength and haven't been running or doing long distance walking as time to time it recurred every time I tried.

1st I do believe strengthening my core has helped with the pain. I'm able to walk a small shopping center without pain.
2nd I'm struggling to find ways to lose weight as running/walking was the best for me. I've tried cycling, air walker and step machine, but results are not showing.

I'm currently on a strict diet plan, consisting of 5 to 6 small meals and high in protein. Drink lots of water a day and gym 4 to 6 times a week (normally 40min cardio and 20min strength training). I've lost 4 to 5kgs already, although it's not visible as I'm struggling with loose skin and toning of legs and hips.

Does anyone have the same syndrome and would like to share their experience in weight loss and how they went about it? Or anyone have any advice on what I should do?

"I really miss running and would do anything to get back into it"


Replies

  • Liftng4Lis
    Liftng4Lis Posts: 15,151 Member
    Losing weight is all about your diet. Caloric deficit = weight loss.
  • Maitria
    Maitria Posts: 439 Member
    If you have Ehlers Danlos, ask your doctor about the types of exercise you can do. Swimming is one of the best. You may not be able to run or do high impact work anymore.
  • lkotalwi
    lkotalwi Posts: 1 Member
    Hi. I have HMS too. I do ok when I'm on top of it, and am able to swim. When I'm not I can hardly walk without support. The medical people I've encountered are not a lot of help and give mixed information. I'm always told to gain strength, but most of the exercises end up causing me to not move for several days. I can manage in the water though. Let me know how it is going.
  • tomatoey
    tomatoey Posts: 5,446 Member
    edited August 2015
    I don't have EDS, but do have hypermobile/unstable joints, and generally poor biomechanics, and have developed tendinopathy in several areas and osteoarthritis in some joints. (Also used to dance, but recreationally). My MO has been to try something, get injured, see a sports med and then PT, rehab that, somewhat improve, get reinjured, rehab that some more, injure something else, etc. So I am interested in your post and any comments :)

    Advice I've had has been to work on developing strength & stability around all joints (e.g with Pilates and light & careful strength training), and yes, to strengthen the core, and to avoid yoga and anything else that exacerbates flexibility (without accompanying strength).

    Also was told to avoid impact and too much repetition, if possible - ie to switch up cardio & keep it low impact. (Running was terrible for me, I developed several problems from there.)

    Swimming is supposed to be great for people w joint issues, but I got an overuse injury in my rotator cuff from that after very little stimulus. I can swim, and do, but not too often, and am limited to breaststroke arms (bc shoulders sublux w overhead strokes) and can't do the frog kick (bc of knee issues - have adapted something between a step and a snap). Also - I do one lap of that, and the next just kicks, using a board.

    I am often on the stationary bike, sometimes the elliptical or treadmill (walking only, though I do mix it up with a bit of an incline, and with speeds). Going outside for walks is good too. On any machine, I set the program to "manual", and try to keep things different minute to minute.

    I do the physio I need to do for specific injuries (stretches and some strength movements) and safe-for-me calisthenics. No extreme ranges of motion. Reps are on the high end for now, probably too high (3x30!) but bc of injuries, I can't take too heavy a load. When I can, I use resistance bands and the cable machine, and sometimes weight machines. (Free weights are better for stabilizers, but have wrist issues too - am usually working around some injury or other.)

    I watch form for everything. I still get injured/reinjured. But, it's worse to do nothing at all.

    So, tl/dr, I do varied activities, using light intensity, with no or very light impact, and a focus on building strength (just what you've been told).
  • tomatoey
    tomatoey Posts: 5,446 Member
    edited August 2015
    Liftng4Lis wrote: »
    Losing weight is all about your diet. Caloric deficit = weight loss.

    This is the best advice, though, in terms of your goal of losing weight.

    I think it would also be smart to have realistic expectations about what you can work towards in terms of muscle development.

    If you can only put your fitness-allocated money in one place, I think PT (with a physiotherapist who understands hypermobility) is where it should go, and maybe rehab/reformer Pilates (w an instructor who understands hypermobility. not the mat classes)
  • Sued0nim
    Sued0nim Posts: 17,456 Member
    edited August 2015
    It's not complicated

    Eat at a calorie defecit

    Your medical condition is irrelevant, it will merely dictate the type of exercises you can do so you should consult a physio but swimming with joint support sounds like the best form of cardio

    Weight loss is about the amount you eat
  • Sandcastles61
    Sandcastles61 Posts: 506 Member
    I have a friend with EDS.... She is constantly challenged, the simplest things will cause something to pop out of place, and she has horrible pain so I have the deepest sympathy for you. She does modified swimming when she is physically able but I am not sure what other exercise type things she does. She tries to stay active though and is a4th grade teacher and does a lot with her grandson. My best recommendation is to join a support group for EDS and you will avail yourself to lots of great information in addition to MFP. The unfortunate thing is you may never return to your previous running routine, so work towards finding another activity that gives you joy that your body can tolerate, and focus on a calorie deficit to lose the weight. All my best wishes <3
  • mbaker566
    mbaker566 Posts: 11,233 Member
    losing weight is a calorie deficit thing that can be done without exercise so that's good

    I would see about doing light strength work to create stability for your joints. I am not familiar too much with your diagnosis so I wouldn't advise much

    maybe your doctor could suggest a physical therapist to help you strengthen and create stability
  • SLLRunner
    SLLRunner Posts: 12,942 Member
    edited August 2015
    Liftng4Lis wrote: »
    Losing weight is all about your diet. Caloric deficit = weight loss.

    Plus one.

    However, you said:
    I've lost 4 to 5kgs already, although it's not visible as I'm struggling with loose skin and toning of legs and hips

    So, you already know how to lose weight. I would say to set your goals to lose .5 pounds a week and watch your calorie intake for accuracy.

    Since it sounds like you want exercise, can you also do some weights that don't include a lot of knee bending (for example, I suspect squats would be out for now)? Maybe pilates?
  • stealthq
    stealthq Posts: 4,298 Member
    Necro-thread.

    Thread is a year old.
  • SLLRunner
    SLLRunner Posts: 12,942 Member
    stealthq wrote: »
    Necro-thread.

    Thread is a year old.

    Why, why WHY do I always miss the dates on threads?

    :)
  • tomatoey
    tomatoey Posts: 5,446 Member
    stealthq wrote: »
    Necro-thread.

    Thread is a year old.

    lol, dang
  • mbaker566
    mbaker566 Posts: 11,233 Member
    dangit

Categories