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Ehlers-Danlos Syndrome & Weight Loss.

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Old 11-16-2011, 04:27 PM   #1
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Default Ehlers-Danlos Syndrome & Weight Loss.

Hello!

I was wondering if anyone else here has been diagnosed with this genetic disease, and if they have any problems losing weight relating to it?

I myself have a lot of pain in my joints, which restricts my movements and how much I can exercise in one go, or over a long period of time (which can be very counter-productive).
I've only recently been properly diagnosed, but I've been dealing with these problems (and being overweight) ever since I was in my mid-teens - misdiagnosis or just not even being able to pin it down due to the number of symptoms is a regular problem .

So basically, if anyone wants to share stories, hints, tips, I'd be really appreciative!

Thanks for reading!
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Old 11-16-2011, 04:41 PM   #2
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There is a thread going for those exercising with various physical challenges. While they likely don't have the same genetic disorder you do, it's a good place to talk about limiting yourself physically within the boundaries your body can handle:

Exercising with obstacles

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Old 12-04-2011, 02:32 PM   #3
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Default I have Ehlers-Danlos, too

I find that it presents both physical challenges to losing weight, but emotional ones as well. The chronic pain leads to depression, which then leads to weight gain. And since I've had a lot of surgery, it's hard for me to be consistent with diet or exercise.

Let me know if you'd like to chat!
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Old 12-04-2011, 05:11 PM   #4
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I don't have EDS, but my cousin does, and I do have a medical condition which is made worse by exercise so it's a tricky subject for me as well. Could you find a physio who specialises in EDS? It may well be possible on the NHS, you could try ringing wherever you'd be sent for physio and asking whether they have anyone there with experience of EDS. Meanwhile, there's an often-quoted saying here: Diet to lose weight, exercise for fitness. Don't worry about relying on exercise for losing weight, just do whatever you can and under medical supervision. If worse comes to worst, you could always lose weight without exercising (I'm successfully doing that), so think of the exercise in a different category.

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Old 12-13-2012, 02:06 PM   #5
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Default Ehlers-Danlos syndrome Dieting and Ideal Protein

In case anyone is still looking for answers to this, like I was weeks back...
Ideal Protein is the way to go.. I am now down over 11 1/2 lbs... With EDS and all its associated issues like Hashimoto's thyroiditis, a UTI, and IBS...
Keep in mind if you are also gluten intolerant or have mast cell allergies your choices are more limited but it is soooo worth it. Just be creative with the meals that you can have.
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Old 02-18-2013, 06:39 AM   #6
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I'm so excited to see someone posting about Ehlers-Danlos Syndrome and weight loss! I have hypermobility type and have an incredible amount of pain unfortunately. I find it to be a big obstacle in my life, but quite so in weight loss since I can't really exercise. I am at the beginning of my weight loss journey. I have lost 5 pounds over the last 3 weeks on weight watchers and have had success with it before. It's the only plan that I have seen people have long term success on so I hope to do the same! I have about 148 more pounds to lose... A lot I know! But I'm determined!!! So I also would love any motivation or advice. I know this thread is old, but I hope y'all will see this Thank you!
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Old 02-20-2013, 01:22 PM   #7
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I have HMS / fairly mild EDS type III. I've been through enough joint injuries and surgeries as is, so I'm trying to do what I can to help avoid those in the future!

I make a lot of effort to do strength training, carefully. Obviously you'll need to be really careful about not damaging your joints, but the stronger you can get the more assistance your muscles can provide with keeping your joints where they're supposed to be.

I'm curious to hear if anyone has successfully gotten to their goal weight whether or not they had a lot of excess skin. Mine is pretty stretchy as is, but I'm not overly optimistic that it will do a great job of "tightening" if I get substantially smaller.
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Old 02-20-2013, 05:57 PM   #8
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I have to agree with the idea that Ideal Protein has works; at least, it has for me. I have EDS III, and have struggled with weight forever. The simple truth for my body is I cannot consume more than 1/2 cup of starches per day without joint pain and weight gain. I cannot say for sure that IP is the best for everyone with EDS, but it is the only thing that has ever worked for me.
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Old 02-20-2013, 11:36 PM   #9
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Quote:
Originally Posted by Esofia View Post
I don't have EDS, but my cousin does, and I do have a medical condition which is made worse by exercise so it's a tricky subject for me as well. Could you find a physio who specialises in EDS? It may well be possible on the NHS, you could try ringing wherever you'd be sent for physio and asking whether they have anyone there with experience of EDS. Meanwhile, there's an often-quoted saying here: Diet to lose weight, exercise for fitness. Don't worry about relying on exercise for losing weight, just do whatever you can and under medical supervision. If worse comes to worst, you could always lose weight without exercising (I'm successfully doing that), so think of the exercise in a different category.
Hi Esofia,

Maybe not in just EDS, but there should be some that specialize in connective tissue disorders in general (there are many types of CTDs). For most people with EDS, exercise is recommended, and, as you mentioned, would be be started under supervision if possible.

I found my symptoms are much better now that I am losing weight and exercising.
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Old 03-01-2013, 06:41 AM   #10
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Quote:
Originally Posted by kaebaka View Post
I have HMS / fairly mild EDS type III. I've been through enough joint injuries and surgeries as is, so I'm trying to do what I can to help avoid those in the future!

I make a lot of effort to do strength training, carefully. Obviously you'll need to be really careful about not damaging your joints, but the stronger you can get the more assistance your muscles can provide with keeping your joints where they're supposed to be.

I'm curious to hear if anyone has successfully gotten to their goal weight whether or not they had a lot of excess skin. Mine is pretty stretchy as is, but I'm not overly optimistic that it will do a great job of "tightening" if I get substantially smaller.

Thanks! I appreciate the response I had 1 bad week a couple weeks ago and gained 3 lbs. but I'm back on track and lost a pound and a half this week. I get discouraged with my EDS... the pain is horrid and the Insomnia is hard because then I sleep during the day and get hungry at night. I've found that having QUICK healthy snacks on hand is very helpful. When I'm hungry and in pain and need to eat with and take meds, the last thing I want to do is have to prepare something! And also the new fiber one protien bars are yummy, filling, and healthy. I have a hard time finding exercises that are ok for EDS and don't cause flares. But yes I look forward to when my muscles can help stablize me more. Been taking vitamin C, calcium, magnesium, vitamin D, and zinc... I do notice it helps a bit. Have any specific suggestions for foods or exercises?
Thanks again!
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Old 03-01-2013, 06:45 AM   #11
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Oh and I also wonder about the skin. I've been told that the slower you lose, the less excess skin you will have, but I don't know how different it is with EDS. Mine is stretchy and a little loose as well. I'll see what research I can do
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Old 09-06-2014, 05:51 PM   #12
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I have been diagnosed with Ehlers Danlos hyper mobility type with moderate skin involvement, I have some chronic pain, lots of joint instability, and I blister super easy and have pretty incredible stretch marks and plenty of saggy skin. I have to date had surgery on my right knee, and both elbows. I routinely subluxate my left hip and shoulder. I have in the last decade realized that protecting joints is of utmost importance.

Weight training is helpful but I find I can only do it at the gym where in most cases the motion is controlled by machines, if I do free weights I tend to mess things up and injure my joints which sets me back. Strengthening the muscles around your joints really helps with joint stability. For my cardio; I walk, swimming is good too but I hate what chlorine does to my hair so I just walk, and I walk and I walk. The Eliptical has also worked for me in the past, really any good very low impact cardio would be good.

When I first started walking I was wearing SAS walking shoes which had worked for me when I was standing at work but after my first try for a little more distance maybe 2 1/2 miles I came home with BLISTERS like 50 or more of them all around the edges of my feet, on my soles, between my toes etc. Clearly walking wasn't going to work unless I came up with something else.

I did find a solution, Vibram five finger toe shoes with wool injinji socks. This solved a number of my walking problems, because of my hyper mobile joints my feet are fairly wide and flattish and that is comfortable for me when I try and force them into "normal" shoes with arch support I pretty much want to cut them off. So walking around for me in a near barefoot state works, the wool socks and the glove like fit of vibrams I rarely have a problem with blisters.Typically I can walk very comfortably for 3 miles from 4 to 6 miles I start feeling gradually more discomfort, after that the strain on my foot joints becomes extremely uncomfortable, I think the furthest I've walked in one go was 10 miles and that really hurt at the end.

As for losing weight, I have like almost anyone gone up and down over the years. I have spent the last 15 years mostly between 220 and 270lbs. I have counted calories-Feb 2009-Dec 2009 from 242-211lbs (-31lbs), Ideal Protein Sept 2012-Feb 2013 262-221 (-41 lbs).

I have trouble sustaining a diet and like any/everyone else I regain once I quit the "diet". Between Feb 2013 and February 2014 after the ideal protein diet I was sick, my hair fell out and I developed Reynauds syndrome, my blood pressure was high, my complexion sickly, and I felt horrible all the time. I gained all my weight back +10 and hit my all time high of 271 lbs.

In January a friend told me to try drinking green smoothies and it worked I didn't start losing weight but I did start feeling ever so much better and the Reynauds which had plagued me so went into remission.

In February I started working on my health instead of my weight. I did a lot of research and changed my life I started eating for health reasons a Whole Food Plant Based diet. Every type of plant, whole grains, legumes, vegetables, fruits, herbs. This type of diet/lifestyle is advocated by many doctors and it has worked, so far I've lost 56 lbs in the past 6 months.

Having lost so much weight my body feels better my joints are doing better with less strain on them and it gets easier and easier to be physically active. Because my new diet/lifestyle is an anti-inflammatory healing one I am in less pain than I have been in my adult life. My blood work reflects how I feel all of my numbers are better, especially my blood pressure which is generally around 106/66 now.

I don't even think about how much I eat anymore, I don't weigh or measure my food I just eat until I'm full, and eat again when I'm hungry. It's not about how much you eat it's about what you eat. There are no refined fats, none, no olive, avocado, coconut, butter, vegetable etc. Zero added refined oils in my food. There is no refined sugar, no corn syrup etc. No dairy, meat, or fish in my house or on my plate.

I do eat nuts in moderation that is one of the foods I limit, and I also limit olives, and avocado because I am still trying to lose weight. I aim to eat a grain once a day, and beans twice. I continue to effortlessly lose an average of 1 1/2 lbs a week. I expect to achieve my goal weight of 135 or lower in the next year. After which I will start looking into plastic surgery to deal with the skin that a combination of Ehlers Danlos, and years of morbid obesity have left me with.
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