Falling apart

Hi. My Physio 'diagnosed' EDS a couple of months ago - it makes sooooo much sense - and GPs has given me codeine to cope with the pain. My biggest problem is that I seem to be getting worse almost on a daily basis. More and more areas are in pain. This week my Achilles tendon is rather painful and has a little bump on it. Im beginning to get a little bit scared. my GP doesn't seem overly concerned or, dare I say it, particularly well informed. I also have Graves, so I know about doctor ambivalence.

Can anyone give me any idea of what to expect as to the progression of this disease? I'm 49.

Thanks everybody

8 Replies

  • Hi im sorry you are suffering, please check out my post on had enough of drugs!!! I have EDS, multi-level degnerative disk disease, POTS,fibromyalgia, etc. I found my pain got worse and worse on Pharma i ended up onmorphine patches, oramorph, volatol suppositories plus anti sickness for cancer patients and amitryptliyn it nearly killed me i went down to 6 stone and was in and unbelievable amount of pain so I stopped all meds and went herbal aswell as juicing and also having acupunture, I now also practice Qi Gong and my pain levels are well under control, Pain medication increases nerve sensitivity and it becomes unbearable. Check out greenmedinfo.com there is hope i am proof of that. Take care x

  • Hi there, thanks for this - a lesson to think about for sure; your journey sounds shocking. I'm glad you are feeling better now. I will look at your links, thanks, and make some plans.


  • If you would like any more info please contact me, The natural way really does work :)

    Take care and I hope your feeling better soon x

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  • painreliefproject.com/

    Please check out this free online seminar :)

  • painreliefproject.com/

    Please check out this free online seminar :)

  • Hey Salbobs, I see you posted this a while back, but if you're a sporadic user like me you might still find this helpful! I'm 21 with atypical classical EDS, so I've not been at it long and won't be much use in terms of progression tales. I do know, however, about the scary seeming to progress super quickly terror, as I've been going through the same thing. While it doesn't feel like it you have to remember that our super loose and stretchy connective tissue saves itself as much as it harms itself - if we dislocated with normal connective tissue it would be considered a 'traumatic' dislocation with ripping and tearing and all sorts, but luckily(?) we're made of stretchier stuff. If you're concerned ask your doc for evaluation by an orthopaedist or geneticist or even just a scan. But I'm sorry to tell you they will probably just recommend more physio. The best thing we can do is self-manage, at least until things change in the care of EDS. Consult your physion on what sort of braces or splints might be useful - for short term relief after acute episodes. Look into ice packs, heat packs, TENs units etc. Examine your routine. My physio had me make a huge list of things to see how I can help myself. I made columns for good diet, bad diet, good exercise, bad exercise, good daily living habits, bad ones... And the key thing is pacing. I'm absolutely horrible at pacing, but it does work. Do less than your limit on good days, and stay active on bad ones. Stop doing what you're doing if it hurts (unless it's physio) and ask for help if you need it. Check out websites for aids and accessories, you can order things VAT free if it's for your personal use related to your condition. It is hard, and it is unfair that other conditions have specialist nurses on hand to calm every fear while we get discharged with a 'sorry, nothing can be done'. But however unfair it is, it's our condition, so we have to bounce back like our ligaments and own it.

    I hope you're feeling a bit better. If you're run down generally or ill or on antibiotics or whatever that can also trigger a flare-up - which is sometimes reassuring as then you know when it will end.

  • Thanks for that pikamonster. The severity does seem to come and go, and I'm beginning to be more aware of how I'm using/abusing my body, which helps enormously. If I do overdo it - gardening for example - I know it will hurt for the next few days, so I try to make sure i don't have much on. Orthoses in all my footwear has also helped.


    Take care

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