Newish with EDS - any advice please

Hi, I was 'diagnosed' last year with HEDS by my physio after pain in various joints/places, and arthritis was ruled out by X-Ray. Really it was my history that suggests HEDS, and the type of pain/lack of movement/hypermobility. Other than some core exercises (which I find very difficult), and very helpful orthoses, I have not been offered any other support, and no longer see the physio. I take codeine for the pain. I feel that the EDS is getting worse, and in particular my hands are getting pretty useless - thumbs have no strength at all and hurt hugely. Back, feet, knees, hips all painful on a daily basis, and sleep can be interrupted often, which makes me fatigued, which makes the pain worse. I also have some breathing issues - gasping, but not hyperventilating - and sleep apnoea which my GP said might be menopause-related. It's all a bit complicated.

My question is should I be getting more support for the HEDS, or is there nothing to be done? Am I on a slow decline to immobility? Can my GP offer anything, should I see some other specialist?

Many thanks in advance.


6 Replies

  • Hiya

    I've also been recently diagnosed with EDS III.

    You're GP would now be the first port of call for any advice and support, as I'm assuming you feel the same you are left to your own devices. I was told that most standard pain killers will not have enough of an effect to remove all of the pain, just to help to keep it at bay. At the moment there is nothing than can be done, but there is research going off, just not much of it and there is minimal awareness. Every case is different, but over the space of a year, I have sadly found my self on a slow decline, in terms of my mobility.

    Hope that things stay at the level they are (or possibly improve) for you! Try and stay positive!

    Kirsty :) X

  • Have you had physio and OT input (orthotics, exercises, aids and adaptions) home assessment, workplace assessment if applicable or pain clinic referral? All these things can help, as can joining EDS UK and/or HMSA where there is loads of advice and ongoing newsletters and emails about latest research.

  • Hi,4wards, and thanks for your response. All I have had are some orthotics (which have helped a great deal) some core exercises from the PT (I'm now signed off), and a referral to a large PT-led pilates class, which left me in tears (of pain).

    My GP said he thought it might get better, printed off the blurb and said at least I don't have the vascular type, not that he's checked. Some days I can barely use my hands, and have not found any of the splints helpful. Not expensive on their own, they are when you have to keep trying different sorts. I might try to make some ring splints....

    I have recently changed my diet to try to make it less inflammatory, we are considering moving house as I find two flights of stairs a challenge, and I have dipped into various websites, but tbh not really found much of practical help. I'll have another look at those sites you recommend.

    Sorry to sound a bit grumpy and defeatist, and thanks again for your response.

  • No need to apologise - everyone feels that way sometimes and when you've got EDS to deal with on top of it it's a wonder we can even break into a smile sometimes! If you are struggling to manage at home have you had a look at this first?

  • Hi,

    I have hypermobility syndrome (although I believe maybe it is the EDS type - I'm not certain) and 2 years ago I was on crutches because my knees were so bad. I couldn't walk anywhere without pain, and it kept me awake at night with discomfort. I was convinced I was going to decline further and end up in a wheelchair and was generally in a very bad place emotionally about it. I was 28. Also had bad pain in hips too. I did see a physiotherapist who helped somewhat and she was lovely, but actually I was desperate to do some low-impact cardio to keep fit (as I'd put on weight due to the lack of mobility).

    I did some research for 'low impact cardio' and I kept seeing recommendations for Ellen Barrett. I bought one of her DVDs and built up doing it SLOWLY. 2 years later I have 12 of her DVDs and also some Suzanne Bowen DVDs (Ellen is my favourite though). She does cardio pilates/ballet/yoga with just bare feet and a mat. I can walk for hours at a time, I barely have problems any more, I've lost over a stone in weight and am stronger and toned ALL over my body. The only time my knees hurt now is when I sit for long periods with little movement (i.e. cinema), or stand up for long periods (i.e. at the pub..!). Honestly I cannot recommend this type of exercise highly enough - it has transformed my life.

    I hope I don't come across like I am trying to sell you something as this is all genuine and I empathise so much with anyone going through joint problems - it is something that I know I will have to control for my whole life (I now work out with one of my DVDs 3-4 times a week, and probably will do forever). As I have managed to change my situation so seriously I really want to help others! Do some research on both Ellen Barrett and Suzanne Bowen but maybe there are others too. In fact, Suzanne Bowen has a free trial of workouts on her website, and I believe you can try Ellen's on her website for something like $10 (you can use it here in the UK where I am though).

    I really hope my message doesn't get removed because it's "promotional" or something. I just can't think of a way to recommend these DVDs without mentioning their names..! [Moderators - PLEASE don't remove my message! :)]

    Essentially I think these DVDs work because they're basically "physio" DVDs in a roundabout way: the physio that we HMS/EDS sufferers need is strengthening and supporting our joints with our own muscles, and that's what pilates does - it builds strength. So maybe in fact any pilates DVDs - or classes - would work the same way.

    I really hope this helps you. I want so much for everyone with this problem to not take medication and accept a slow decline. I am proof that you can turn it around! *feeling amazing, strong and happy*

  • Thanks, I'll check these out.

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