Merida
Well-Known Member
Because of this forum I read an article in a medical journal and wrote to a researcher in another country concerning the many structural issues that I have, and run in my family, as possibly related to chronic fatigue and chronic pain. The researcher ( an M.D. and Ph.d.) kindly wrote back and mentioned that what I described is consistent with Ehlers Danlos Syndrome. Wow. He even gave the neurological connections as to why some of these congenital issues occur. Wow.
I understand that there are now (2017) 13 subtypes of Ehlers Danlos, and some other possible mutations not exactly categorized. Wow. I have been trying to understand the underlying genetic issue with me ( and my family) for 20 years. No one even mentioned EDS.
Interesting that the EDS support group often came to my Fibro/ chronic fatigue group. I noted that I and many of my group members shared similarities with the EDS people, but we did not have the classic hypermobile joints. Well, that is not necessarily found in all EDS profiles.
So, if you have some of these characteristics you may want to rethink and research EDS: scoliosis, long, redundant colon, Tarlov cysts ( if you have had sacral MRI), vascular irregularities like hemangiomas, hip/pelvis/ sacral pain, big bunions, mitral valve prolapse, high intracranial pressure, pelvic prolapses - rectal prolapse, bladder prolapse, small posterior fossa, neck instability, and ????
I hope to add more as I learn more.
I understand that there are now (2017) 13 subtypes of Ehlers Danlos, and some other possible mutations not exactly categorized. Wow. I have been trying to understand the underlying genetic issue with me ( and my family) for 20 years. No one even mentioned EDS.
Interesting that the EDS support group often came to my Fibro/ chronic fatigue group. I noted that I and many of my group members shared similarities with the EDS people, but we did not have the classic hypermobile joints. Well, that is not necessarily found in all EDS profiles.
So, if you have some of these characteristics you may want to rethink and research EDS: scoliosis, long, redundant colon, Tarlov cysts ( if you have had sacral MRI), vascular irregularities like hemangiomas, hip/pelvis/ sacral pain, big bunions, mitral valve prolapse, high intracranial pressure, pelvic prolapses - rectal prolapse, bladder prolapse, small posterior fossa, neck instability, and ????
I hope to add more as I learn more.