Hi All,
Thanks for you posts. Talking about it does help as I find I'm on my own with this quite severe issue a lot of the time.
I don't think EDS type III (hypermobility type) has any genetic markers - at least that is what the professor told me.
However, he did mention that there is a link to M.E.. I also suspect that a subset of ME'ers have mild EDS (like me).
The swallowing issues you describe (things getting stuck half way down) is exactly like me. I had this for years with m.e. (as many do), but 2 years ago things started happening in the upper throat area too (felt like it was hard to get solids past the adams apple area). This is what pushed me to get them to investigate more, as I felt it was something different to M.E..
I described the upper throat swallowing problems to the docs, but didn't mention to them about the lower down issues. The manometry test showed I have issues lower down, which I'd forgotten about because the upper throat issues seemed much more urgent.
EDS apparently causes saggy organs - including, as they are now finding, the oesophagus, and the bowels. I have a rather uneducated theory that some of our food intolerances are due to food not being pushed through the gut fast enough. This, coincidentally perhaps, is what seems to happen with this type of EDS.
I hasten to add that swallowing problems do come and go with ME and in the last 2 years I have had consistent unable to swallow solids symptom, so there is a difference in level of symptoms.
However, one thing I have learned: Don't stop pursuing the cause of your symptoms if you feel its not M.E. . My GP to this very day doesn't seem believe anything I say regarding my swallowing and says they will never see anything in any of the tests.(which they did of course, but I had to go via other routes to get seen).
It can often be hard to distinguish whether it is an M.E. symptom - but this was/is unrelenting and hasn't gone away at all.
Flash
Thanks for you posts. Talking about it does help as I find I'm on my own with this quite severe issue a lot of the time.
I don't think EDS type III (hypermobility type) has any genetic markers - at least that is what the professor told me.
However, he did mention that there is a link to M.E.. I also suspect that a subset of ME'ers have mild EDS (like me).
The swallowing issues you describe (things getting stuck half way down) is exactly like me. I had this for years with m.e. (as many do), but 2 years ago things started happening in the upper throat area too (felt like it was hard to get solids past the adams apple area). This is what pushed me to get them to investigate more, as I felt it was something different to M.E..
I described the upper throat swallowing problems to the docs, but didn't mention to them about the lower down issues. The manometry test showed I have issues lower down, which I'd forgotten about because the upper throat issues seemed much more urgent.
EDS apparently causes saggy organs - including, as they are now finding, the oesophagus, and the bowels. I have a rather uneducated theory that some of our food intolerances are due to food not being pushed through the gut fast enough. This, coincidentally perhaps, is what seems to happen with this type of EDS.
I hasten to add that swallowing problems do come and go with ME and in the last 2 years I have had consistent unable to swallow solids symptom, so there is a difference in level of symptoms.
However, one thing I have learned: Don't stop pursuing the cause of your symptoms if you feel its not M.E. . My GP to this very day doesn't seem believe anything I say regarding my swallowing and says they will never see anything in any of the tests.(which they did of course, but I had to go via other routes to get seen).
It can often be hard to distinguish whether it is an M.E. symptom - but this was/is unrelenting and hasn't gone away at all.
Flash
