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those of you with EDS III


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The above post is correct, if you have EDS III, the problem has been there all along, but as you get older, the problems can be more noticeable.

You may want to go to http://ednf.org/ for info on coping strategies. From what I read there, exercise under the guidance of your doctor and/or physical or occupational therapist is supposed to be helpful for stabilizing loose joints. Additionally, I've gotten some good suggestions from a speech therapist to help me protect my airway while eating and drinking as spinal problems have injured the nerves that control this process.

Also, you may want to think about seeing a rheumetologist, orthopedist or even a pain management doctor to help you come up with a plan for stabilzing (and referral for PT if you need it), as well as meds if necessary.


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thankyou for replying.

i dont know alot about EDS as most of the stuff ive read i dont understand. I have been having physiotherapy but stopped it for a while but i am now going back.I am also going back to see my rhemolotogist as i was just taking paracetomal for the pain but it doesn't work.

can i ask another quick question,hope im not annoying anyone by asking to many questions.

how can you suddenly start getting pain in a joint that wasnt painful before,is it due to overuse.

i think i better read some more.


h x

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Hayley, it could be due to overuse, but it could just as easily be from the ligaments in the joint being overstretched from just a single inicident. Part of having EDS means that joints tend not to be stable in general, so one wrong move could lead to pain. For me, this is the case with my upper spine and for some reason, my feet.


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