Obesity and EDS

AteATomata

Hi everyone,
I'm new to this group, I just found it and I'm really happy to see a group on here about this. EDS (type III) has really impacted my life. I was diagnosed in high school and ever since, the diagnosis that gave me understanding about my body also de-powered me; I've been living with the impression that my body is weak and there's nothing I can do about it. And that's exactly what I let happen.
Since then I have been such a defeatist and haven't been active very much, afraid of injury. I gained weight, and after trying to lose it with exercise, I was too vigorous ended up messing my back up with a slipped-disc, making it impossible to move without severe pain for several days. Anyway, over the years the injuries came, and ten years later I find myself 100 pounds heavier.
My frustration is that I feel, with having a number of physical limitations (beyond EDS) and conditions that make it especially difficult to lose weight, I'm finding it to be an impossible and monumental task. How does a person overcome these challenges and "outsmart" the disease? Assuming that I safely exercise and eat "right", a path I've been down oh so many times (I'm vegetarian by the way, not going for fast food or anything!), I feel that I can't get past the psychological hurtles and the physical limitations of a truly good workout.
Surely there are many people with EDS that are able to lose weight, right?

gazz777au

I have no "EDS" diagnosis for myself yet but Hypermobile as long as I remember (I thought some of it was normal range of motion, and some of it stretched muscles - pardon my ignorance).

I carried too much weight for all of my adult life (and much of later childhood) but lost 30kg (over 60lb) last year.

I did mostly walking, but a lot of the time when I could not walk much (or at all) just tracking calories.

My inspiration you can read about on my profile. Despite having problems, we can achieve.

After the weight loss I started having ankle / foot problems from bad flat-foot (PTTD).

A physio gave me exercises to build up some strength.

You may friend me if you wish.

I have many friends on here with physical health issues and they are ALL champions at "giving it a go".

You can do this - it is not just about sweating the fat off 2 or more hours a day.

All the best !

Jendaby

I also have EDs. I did not know what it was until my sister was diagnosed. I managed to do okay, as long as i was careful about movement, for a long time (though I once tore my rotator cuff opening a door). Then, one day a woman shoved me on a bus, and it actually caused me to turn in such a way that my uterus tore. I was put on bedrest. This was not long before I was married, and I ended up packing on a lot of weight because of the forced inactivity. I was lucky to manage to heal from the tear, and eventually, with a lot of bedrest and very close supervision, I was able to carry two babies to term. Issues in the birth of my son (torn uterus not repairable this time), I had to have a hysterectomy. Since then, my hypermobility and general joint issues have significantly increased. I find my knees bending the wrong way, I wake up with at lease five things out of joint every morning. I can't walk in the morning about 50% of the time. My doctor thinks I have rheumatoid arthritis now, connected to the EDS. I have also started having very significant bruising beyond what I used to get.

You are so right - it IS incredibly discouraging! Especially when so many doctors don't know anything about EDS and will just try to claim that anyone overweight is just lazy or has a low pain tolerance, etc. When I can, I do low impact yoga - mostly Kundalini. I also walk when I can. I would like to swim in a safe environment (ie: lifeguard on duty in case I dislocate something and can't get back to the edge), but i haven't found anything. I have had people say to me that only skinny people get EDS, but I know they are wrong. Some of us have it, and the fear of more damage (or the insistence that we must be on bedrest) adds to weight.

I have been seeking different things that i can do while seated that allow for increasing strength without too much joint strain. i am hoping to slowly build the strength back up and maybe be able to compensate for the lack of reliability in my joints. My health insurance, of course, covers absolutely nothing for EDS, so physical therapy is beyond my means.

angellover1974

I have had EDS for more than 25 years, after having my 4 children (with all the trials that go along with that) my last baby was delivered by emergency C-section (not my choice) since having him and the delayed healing etc. I have found it has taken me much longer to get back in shape. My mobility has got increasingly worse and now I have been left with the issue of every step I take a hip dislocates, which is fun! I would love to find that magical exercise that tones me up but doesn't wear me out! Build up the muscles to hold my joints a little more secure.
Any ideas gratefully received

kayleefrye2012

I have EDS and I have always had problems with my right knee and ankle and I couldn't do any sports or exercise when I was in high school. I have gained 50 pounds. I started out with stretches and some exercises to strengthen my injury prone areas. I do mild exercises once I get use to those I go up a little. If I am sore or start to feel like I am I stop and rest for a couple days. Be easy but push yourself at the same time. If you have a hard time with it I would talk to your doctor you go to for EDS.

pleur

Hi everyone,

I've just joined MFP and looking for new friends and wanting support in loosing the weight.

I have been diagnosed with EDS for approximately 6 months now but apparently when the doctors and rheumatologist looked through my past medical history it was ''apparent'' that I'd probably had the syndrome since a very young age!

Over the past 6 years my weight has fluctuated and I've been between a size 16 - 20 on and off... currently I got stuck at a 20 and then had to try on a size 22 pair of jeans, which made me cry!

I've been told I can't look at ''high impact'' sports due to the EDS but I can diet by counting calories, pushing my walking by ''brisk'' walks and longer walks to get rid of a few more calories that way, I can watch what I eat and to have a smaller plate serving, I've been eating more fruit and vegetables, drinking more water, as I used to drink an enormous amount of sugary drinks!

How are you all finding it losing weight? What kind of exercising do you do if you can't do the high impact such as running, sports etc?

Thanks for reading xx

ruderiva

Hello there! The best ways I've been able to exercise while avoiding sublux issues have been swimming and cycling. I don't know if it works for others, but going for a bike ride usually helps stretch my spine out in a slow way, and sets my SI joints back into place. A few EDS friends have started doing low impact water aerobics at the community center- actually joined the seniors class, but it seems to be working really well!

imogen__may

Hey guys,

I'm new here, it's lovely to find a group of people who will really get just how hard this all is!

I totally understand where you're coming from, but if you can't exercise then you just have to be super careful with what you eat. I have my cals set at about 1400 (you shouldn't go under 1200, if you we're laying in a bed all day not even blinking, you'd burn about 1200, it's what you need to function) .. you can always up the intake if you're able to do some exercise.

Swimming is ideal, it's fairly stress free on joints (taken easy of course!) but have a look around for adapted gyms and get advice from the trainers there, you'd be surprised what you can do! For example, the cross trainer is also a low impact exercise so again really good for us!

I'm 14st, down from 18st. Been very poorly with my EDS for the last 15 years, but now I'm desperate to regain some movement! (Not been able to walk for about 8yrs, power chair user, have a subrapubic catheter, a PEG-J tube, a NIPPY for my breathing .. etc)

Anyway, really lovely to meet you all,

Imogen

vixxix

Hi, also new here.

I was diagnosed with EDS about 3 years ago, after years of boom-busting on exercise to try and control my weight, and inevitably trying too hard and subluxing something, because I had the legacy of people telling me for years that I was lazy because I couldn't do as much.

I've decided this year is the year to get exercising on track. I've got much more strength these days from doing pilates twice a week, and that's really kept me on my feet. There's a limit to the other exercises I can do. Unfortunately I am hypermobile in my feet, and regularly sublux/dislocate my toes. Which makes walking tough at times (although I try to do more). I do the same with my ribs, which also rules out swimming, which makes me pretty cross, as I love swimming. However, I got a Wii Fit last year, and found that's really good to use, because even on bad days I can do something, even if I'm only doing some hula hooping for 10 minutes.

I'm also trying to eat better, and eat more, as I've also spent years eating too little, which hasn't helped with my weight issues. I've not really told anyone about this part yet, since I can't stand when I'm eating better people telling me I am or am not allowed certain foods. That's just irritating!

Anyway, I'm pleased to find this group of people who understand how tough it can be with this condition, and I hope you all reach your goals, whatever they are!

walkingforward

Bumping to connect / reconnect.

New friends welcome.

Gary

bumblebreezy91

Hi, I'm Brianne, I'm 22 (23 in Feb) and I have EDS III. I'm 5'4" and I have 94 pounds left to lose. I'm getting married next May, so between wanting to lose weight for EDS reasons, I also want to look great in my dress and not be uncomfortable on my big day. Feel free to add me! I'm online everyday to log food (I don't have the app) and I frequent the forums.

ETA: I was diagnosed with EDS last year. Finally some answers for what I've been experiencing.

CraftMamaDee

Hi I'm Deedee from ohio! I'm 31 and married with a daughter. So happy to find this group! I was diagnosed in 2009 with EDS type III. I've had a long hard journey through the medical system and gained 100lbs in my teens while in a wheelchair and having untreated hypothyroidism until I was 21 and already 330lbs. I've gotten up to 355 but I'm back down to 335 now its still way too much on my 5'4" frame. It's caused much more pain being this big it makes my unstable joints much more unhappy. I live in chronic pain I've got several back deformities and conditions as well as fibromyalgia and inflammatory arthritis. The hardest part of getting healthy for me is fitness. Its really hard to work out when you are in intense pain. I've just recently got a YMCA membership now so I can swim. Getting in the water helps a lot. I've got a whole person worth of weight to lose and I'm dedicated to getting it off this time. I've lost far more weight than the amount I need to lose over time if I added it up but I've never got anywhere near that goal. I'm not going to push myself too hard or bully myself because I'm impatient. I'm not worrying over what the scale says just how I feel and trying my best! I know now that it takes time to get the weight off. I'm not going to do some crazy fad diet again as I've been the victim of the vicious cycle and I am done being ridiculous about my eating habits. I'm just making better choices, cooking more at home from scratch meals, eating more veggies, less carbs, and cutting out as much refined sugars and sugar substitutes as possible. I'm not cutting them out completely because then I wouldnt stick to it. I'm just eating balanced