Dieting with Obstacles - Ehlers-Danlos Syndrome & Weight Loss.




Lily Phoenix
11-16-2011, 04:27 PM
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!


mandalinn82
11-16-2011, 04:41 PM
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:

http://www.3fatchicks.com/forum/dieting-obstacles/245339-exercising-obstacles.html

:wel3fc:

Erinp918
12-04-2011, 02:32 PM
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!


Esofia
12-04-2011, 05:11 PM
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.

eldavey
12-13-2012, 02:06 PM
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.

txtort
02-18-2013, 06:39 AM
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!

kaebaka
02-20-2013, 01:22 PM
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.

dcapulet
02-20-2013, 05:57 PM
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.

dcapulet
02-20-2013, 11:36 PM
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.

txtort
03-01-2013, 06:41 AM
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!

txtort
03-01-2013, 06:45 AM
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 :)