Weight gain. How do I shift the extra... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK
2,448 members804 posts

Weight gain. How do I shift the extra pounds?


I have many problems one being hEDS. I am 5ft5 at 13st4 and I feel so unhappy. I do Physio exercises when I remember. I've been told not to go to the gym yet. I'm apparently too weak. I am getting more and more fatigued and tired. More pain and more fed up. I am trying to be body positive it just doesn't help that my clothes are shrinking. I am trying not to burden my family with my issues. How do I exercise without too much risk? Is there a magic pill or diet plan? I can't hack it anymore.

12 Replies

Hello have you tried swimming? I am hEDS, early onset arthritis and neurological disease, I found swimming very helpful for weight loss, I am 6ft and just under 16 stone, but this time last year I was 18 stone, I was overly concerned with not hurting my joints but then realised being heavy was hurting them more. Two things have helped me, going wheat and gluten free, and swimming twice a week. First time swimming hurt so much but I took painkillers and went again two days later, now I can swim twice a week, it doesn't hurt my joints and it's very therapeutic, am even ready to try aquafit. If you don't fancy swimming I recommend getting a dog, my Labrador makes me go out every day for a little walk, sometimes it's only 10 steps and throw the ball but on a good day I can do more, am lucky enough to live near a fabulous beach (Scarborough North Yorkshire). I wish you lots of luck with your endeavour and give swimming a try 😁😁

I have a dog. He unfortunately has pulled my back out on occasion. However I do try to walk him, if I'm not feeling it I do have to use my powerchair. The fresh air on its own is nice. I'm Essex based I could wheel down to the beach but I wouldn't be able to carry the dog too. It's a bit far for him he's very little. However I think I need to be brave and try.

Walking is a good idea, get a fitbit & set challenges with your friends. The walking does cheer me up & makes me feel more energentic and only do 1/2 hr at a time.

Yoga is as gentle as you make it, the idea in that is everybody is different so people do what they can. Some ladies have chairs in my class for the exercised they need support. Its another thing that also cheers me up.

Good luck hope you find something soon. Sue

Pennyguin14 in reply to Susieos

Sadly I don't really have any friends. I do but they live 70 miles away. The rest are online, or with children. I have very few of them. And I don't have money to afford a fit bit. Walking for twenty mins may well be a bit steep at he moment. Although it would be something I'd like to achieve. Maybe not yet but a gradual raise up to that. I was thinking walking on and off days with the dog, so one day walk, the next use my chair, then switch and gradually build myself up.

I would second swimming. It is good for joints, gentle on them. Check out to see if you have a hydrotherapy pool close to you, not just NHS ones in Hospitals but sometimes special schools or residential homes and schools have them and have public sessions that you can join. Or see if there is a special aqua fit session for people with long term conditions.

My son goes to a hydrotherapy pool once a week and the half of the benefit comes from having friends to share these things with at the pool.

The diet that has worked for me is the 5:2. Five days a week I eat normally, (by that I mean the sensible eat food, mostly plants, not too much) then on the two days I decrease to 500 cals. It works for me, and I have been able to keep my weight down to a reasonable level despite thyroid problems.

But everyone is different, you have to do what works for you and your family.


1. Low carb works well. It keeps you less hungry due to the higher fat, and the fat and protein help with fatigue a bit. I am on low carb due to being diabetic, and have lost 2 stone already, even though weight loss is not the primary aim of the diet. With the massive fatigue I feel on a regular basis, the idea of trying to limit my calories to 1000 to 1200 per day is ridiculous. You don't have to do Atkins style strict carb counting - replace all pasta, rice and potatoes with vegetables and salad. Change your bread to Burgen non-gluten free. Eat a bit more meat.

2. hEDSers are advised to do Pilates to keep those core muscles strong, and avoid Yoga which stretches joints even further.

3. hEDSers must take gentle exercise - but you are best doing some general walking on the flat and more importantly doing weight training to strengthen your muscles. Initially, avoid the traditional rowing/climbing/treadmill style exercise of any kind - it is bad for joints and consumes energy without giving you the muscle strength you need. Once your muscles are stronger you will have both more energy to do 'normal' exercise and also your joints will hurt less, so it is a double win.

4. Ask your Physio to recommend a class you can take.

5. Most people find swimming the best (I have psoriasis which flares up after contact with chlorine water so don't do it).

Whatever you try, keep on trying!

I think I have to with starting is to remove gluten and wheat as much as possible if I can. And dairy, it's going to be a struggle but if it helps with some of it then good. Meat I am looking to cut out eventually as much as I like eating it. I have to try at least.

I have issues with my disc's popping out. It makes swimming properly very painful. So instead, I walk in the water swinging my arms beneath the water. Hydrotherapy pools are best for our joints but a normal pool is just as good. Just don't over do it. Build it up gradually!! Xz

Thank you for your reply

Having said that, most days I'm far too tired or in far too much pain to be going swimming especially on my own! If I'm not having the best days, I need help getting changed. If the water isn't warm enough I can't stay in for.long enough to get decent exercised enough!

I've lost a stone so far using a protein shake at lunch or.home made soup using my soup maker. It cost £60 from tesco but I paid £2.50 because I paid using my vouchers!! I restrict my calories to between 1200 and 1500. This has helped so far!

Hi. I feel for you it's so frustrating I've been advised to keep moving whatever's going on maybe 15mintues or whatever you can do before pain increases being active (ironing, tidying gental stretches or movements etc) then 15 in seated or restful activity like check email sitting in chair. As I used to sit in sofa for hours a day due to pain I'm hopeful as well as muscle strength this will help with weight.

Lots of sensible stuff already said I won't rehash by carrotsmama. At my limit with a tech screen so I'm being quick. My weight has been an issue for years. I do as much activity as I can, ate right yet struggled to keep it off. Even when coaching and playing sports I was very big. Even after going milk and gluten free due to intolerances. That didn't all change until recently.

I've had PCOS since I was 20 and that plus being in a monogamous relationship I made the decision 23 years ago to go on the contraceptive jab. My weight crept on over 5 years and wouldn't shift. Last year they couldn't get the Jab in stock so I figured that after 22 yrs, I should try without and see if it made a difference to my weight. It has, the weight came off very very slowly at first, ½ a pound to a pound a month but since my period restarted (a year after the last injection) it's coming off much quicker. Like I say I eat right and am as active as I can be so in sure that helps.

I also avoid "diet" foods. Had low fat/low calorie stuff for years and it never helped. I stick to food that is as unprocessed as possible and feel a lot better for it.

I couldn't do any it without the Mister, he's the one who shops, cooks the main meals (nothing we eat Monday to Saturday takes more than 10 minutes to prep & 20 to cook as he works full time) and he is happy to use a prophylactic so I don't need to use the pill or anything else that will make weight loss hard again. He wants me healthy and happy so it was all an easy decision for him to go with me on it.

I'm now bang on 14st (88.5kg approx) At my biggest, in 2005 I was 17st plus. It'll be a while before I'm down to near an ideal weight , (I was 5’5” like you, bent spine puts me nearer 5'3). Quick fixes will only have the weight back on again. I know, I tried most of them! A lifelong sensible eating plan works slower but the weight stays off. keep treats as treats and have once a week and reward yourself in other ways. Build up physical activity slowly if you can cope with it.

That's it! I hope you find a plan you like. There's so many recipes, books and plans online now and you can do those diet clubs like slimming world etc online too now is that's what would suit you. Most surgeries have a diet nurse you could ask to talk to as well.

Good luck with whatever you choose to do xxx

You may also like...