houswoea Posted March 3, 2012 Report Share Posted March 3, 2012 Hi friends,I was trying to decide who to tell about my frustrations. I thought you guys would understand. I was diagnosed about two or three years ago with POTS. I'm doing much better now with that, walking around and everything Now I am diagnosed with EDS type 3. I am really frustrated that this seems to be unending. I just want all of it to stop. Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 3, 2012 Report Share Posted March 3, 2012 Sorry about your frustration. Certainly understandable.Just to put a different perspective on it...you've had the EDS since you were born and before you were diagnosed with POTS. It's just that now you have a name for it and you know it may have predisposed you to get POTS. Also, now you know that you have it, you can be more careful with your joints so you don't injure them by over stretching them. You can also perhaps work on strengthening your muscles so that they help take some of the strain off the joints. It's great that you're able to be walking around. Hopefully that will keep up. Enjoy it!!! Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted March 3, 2012 Report Share Posted March 3, 2012 I'm kind of reversal from you. I was diagnosed with my EDS in 2005 and would have foreseen continued working in the 60+ hour workweek that I so enjoyed (had I not been seriously injured when hit by a car, which despite my greatest efforts took me away from that). I commited to the exercise regime of my specialists and felt good. I could live with my aches, pains and being patched up, injected and courses of physical therapy/occupational therapy as needed. Any complications from surgeries were simply dealt with as complications (had surgeries and therapies long before ever being diagnosed with EDS, so to me we continue to treat as before--very conservative orthopedically, and surgery only when absolutely necessary). It was not until 2011 that I was diagnosed with my POTS altho I battled with near syncope for 2 1/2 years til then with various trials of meds and lots of testing/referrals. I found my POTS last summer to be the most debilitating thing that ever happened to me. Once I got started on something that seems to be helping for the most part, I am doing much better than last summer (I don't know if it is because of cooler winter weather but I'm making the most of things while it lasts). Before EDS came diagnoses of osteoarthritis and fibromyalgia. I already had an orthopede, a rheumatologist and neurologist on board and now cardiac/cardiac specialist in dysautonomia so simply receiving the diagnosis was not so shocking to me--it just explains a lot (looking back 5 decades). The physicians treat my symptoms. I arm myself by learning as much as I can and help to educate my physicians who have heard of but never had an EDS pt. that he/she was aware of. My own PCP says she's now certain there are more--just not having been diagnosed. All of my orthopedes, physiatrists, rheumatologists have encouraged exercise with me but caution me to avoid point of inflammation (especially since I cannot take aspirin, ibuprofen or NSAIDS). As for the muscles and joints, I was told the old saying--use it or lose it. Glad you're doing well with your dysautonomia :-) Quote Link to comment Share on other sites More sharing options...
skiberthoud Posted March 3, 2012 Report Share Posted March 3, 2012 Sorry for your frustrations! I agree Chaos - at least you now know about your EDS diagnosis. That knowledge will prove helpful in dealing with what comes your way as a result. But sometimes we all just "want a break." This isn't the way we were created to live. I'm glad to hear that you have been making some good gains! I hope you are able to focus on the positives and keep making advancement! And I believe that one day all our ailments will be a thing of the past and we will get to live the way we were created to live. Can't wait! Quote Link to comment Share on other sites More sharing options...
roxie Posted March 3, 2012 Report Share Posted March 3, 2012 I was diagnosed with EDS a few weeks ago too. It's nice to know the cause of my POTs but it stinks when you realize EDS is lifelong, my geneticist told me it's nothing to be afraid of. If anything knowing you have EDS can give you power. Many people aren't diagnosed young and then their bodies fall apart when they are old. Knowing now that you have it you be much more proactive in slowing any progression that may come. Quote Link to comment Share on other sites More sharing options...
houswoea Posted March 4, 2012 Author Report Share Posted March 4, 2012 Thanks everybody. And yes, the POTS was so much more disabling, and still is during flares. So on the plus side, at least I can stand AND I'm not even screaming in pain anymore! I'd rather not fall apart, but God knows what he's doing. I wish He would let me know what it is Quote Link to comment Share on other sites More sharing options...
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