Ehlers-Danlos Support UK

Just Diagnosed with EDS Type 3

After 17 years of pain and fatigue my GP finally referred me to a Rheumatologist who has diagnosed me with EDS Type 3. I'd never even heard of it and was convinced that it was Fibromyalgia or something similar. Once she started explaining it all everything all made sense right back to my childhood. I used to be so flexible as a child and did a lot of ballet but I am stiff as a board most of the time now. I am just in the process of looking at what changes I can make in order to alleviate the pain. One of my concerns is that I am a little overweight and suffer greatly with lower back pain (amongst the other niggling pains). Obviously with the New Year I intend to diet and lose 3 stone whilst also doing Dry January which will hopefully kick start me.

I work full time and am living on my own with two teenage boys. I've just got the point that I no longer require sitters to look after my youngest but also realise that gym membership and classes are expensive and I cannot really afford them. I'm waiting for an appointment with a specialist physiotherapist but was wondering if anyone had any advice on life changes/exercises/diet that may help me?

Any advice would be greatly appreciated, like I say I do not know much about EDS.



1 Reply

Hi Spiral. My husband and I had got so unfit - we're 66, and I felt we were settling in to 'old age' much too fast. I'd gained weight and was struggling to lose it - I'd cut out everything that made me gain but still wasn't losing it and my husband had type 2 diabetes, blood sugar level 60. Everything felt like hard work and left me exhausted, so I felt I had to do something (it sounds as though you're at that point now). I told him I wanted to buy an exercise bike. He scoffed and said the only exercise I'd get with it was dusting it, but we did it (we got a Reebok on Amazon) and I started using it so he did too. The weight started dropping off wonderfully and our fitness improved so much that we were so encouraged that we bought a Reebok treadmill as well and that boosted fitness hugely so he went for a cross trainer too (I can't use that at all because of severe arthritis in knees though). The point of the story is that we both lost a stone in six months and that was with eating an extra treat once or twice a week, and both felt so much fitter. When he had his bloods done again they were shocked - his blood sugar is now 40. He's not diabetic anymore! The EDS does affect what I do on some days on the bike and treadmill - If I'm in a lot of pain I do less and there has been the odd day where I've done nothing, but most days I aim to do two or three short goes on the bike - I started with just a minute at a time and built up VERY gradually, never going on to a programme with any resistance because of the knees, but just keeping it on the basic, and not too fast, and my aim is for 7km at a time, two or three times a day, and between 6 and 10 minutes on the treadmill, with the slightest incline and walking not too fast, again because of knees. I support myself with arms too, so if you're thinking of getting anything like a treadmill, I'd make sure you get one with arms that come round the sides. But it's the exercise bike that I think is the most important. I know we'd never bother to go to a gym, but if you've got something at home that you can just pop on for a few minutes, particularly if you have somewhere to put it where you've got a tv too, it's ideal! Or if you haven't got a tv but a boring tv programme comes on, that's also an ideal time to pop on the bike:-))) Hope that might help:-))) I perhaps should add I'm quite limited with many exercises and some of the exercises that the NHS physio gave me I was told not to do by the Rhuematologist at the hospital because my ligaments could be damaged, so make sure any exercises you're given are by someone who knows enough about EDS, but the bike is one of the safer exercises, and the treadmill is good because you need weight bearing exercise for the bones. To lose weight I had to almost cut out starches - potatoes, bread, rice, and pasta and I bught a spiralising machine which turns stuff like courgettes into 'spaghetti' and eat much more veg and fruit and that's the only thing that works for me. I now eat slightly more and do buy a piece of cake once or twice a week so have relaxed it all a bit but with the exercise I only gained 3lb over Christmas and I really did tuck into everything well then, but normally I'd gain FAR more than that, so I know I can easily lose those few lbs now by just going back to my no/low starch and low sugar diet that is my normal way of life now. So it's a question of finding what works for you and making that your normal lifestyle really.


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