TCP Posted November 3, 2014 Report Share Posted November 3, 2014 I was obviously born with Ehlers-Danlos type III (hypermobility) and have only just got diagnosed with it at the age of 54. I have also been diagnosed with POTS and Neurocardiogenic Syncope. Apparently POTS may have started after glandular fever in 1984 which I went on to develop into ME or was it POTS? The EDS predisposed me to getting POTS anyway. So many questions have now been answered. Many loose ends have been tied up. I am starting the 'tilt-training' exercises and working on trying to get my nervous systems well balanced. Fingers crossed! Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 3, 2014 Report Share Posted November 3, 2014 Hope the tilt training works for you! Keep us posted! Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted November 3, 2014 Report Share Posted November 3, 2014 Tilt training? Do tell! Quote Link to comment Share on other sites More sharing options...
xRobin Posted November 4, 2014 Report Share Posted November 4, 2014 I'm interested in tilt training too!I also have ME and have been doing orthostatic training which has helped (but definitely not cured) POTS. Quote Link to comment Share on other sites More sharing options...
corina Posted November 4, 2014 Report Share Posted November 4, 2014 Glad you found answers, it's never too late! Hope it will lead to a better quality of life! Quote Link to comment Share on other sites More sharing options...
TCP Posted November 4, 2014 Author Report Share Posted November 4, 2014 Thanks! Yes the tilt training is supposed to help but there is no cure, it's all about managing symptoms isn't it? The tilt training is as follows: http://www.dizziness-and-balance.com/treatment/rehab/tilt%20training.htmlI'm trying all that I can to help as much as possible. I have never been a fit person and my body does not like exercise. I know some people can tolerate exercise and others not. The ME makes it hard to tolerate exercise and the nerve inflammation also complains with anything too full on or repetitive. With EDS they advocate exercise and building up muscles to support joints and if you have POTS with it is beneficial to build muscle in the lower legs to help with the blood flow. I have some physiotherapy scheduled to start next week and I'm going to be cautious about it as I don't want to end up in even more pain. How have you found exercise? Quote Link to comment Share on other sites More sharing options...
Friedbrain Posted November 4, 2014 Report Share Posted November 4, 2014 I'm glad you were able to get diagnosed and, along with that, to receive rehabilitation guidance! Unfortunately for my sister, her hyper mobility (most likely EDS) has never been diagnosed. Now in her 40s, she's having problems with her arms falling out of their sockets, etc. I didn't know there was anything she could do once it got to that point! Huh. I took my son into get diagnosed, in order to be "ahead of it" because he's hyper mobile like she is (and also has some unusual developmental issues that are characteristic) but the doc's only advice had been to be kind to his joints (soft impact exercise etc.). Who did you see to receive the PT ideas? Quote Link to comment Share on other sites More sharing options...
TCP Posted November 5, 2014 Author Report Share Posted November 5, 2014 Initially to get a dx I sent lots of information to my Doctor to see what response I got and luckily the doctor referred me to a rheumatologist who diagnosed EDS III and a cardiologist who sent me for a tilt table test for the POTS dx. The rheumatologist put me down to have physiotherapy. The 'tilt-training' was suggested after I had the TTT and the doctor there handed me an information sheet explaining how to do it. Quote Link to comment Share on other sites More sharing options...
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