That’s very interesting about the reclassification debate, as well as about the pregnancy connection. I’d always had some gi problems and neck and back problems, but everything started to fall apart (literally) when I was pregnant at 32. That extra relaxin is just enough to send us over the edge I guess. Does anyone know anything about diet and EDS? I know many people with EDS have IBS and often gi odditities (hernias, diverticulosis), but I’m wondering anyone has also had either celiac or gluten intolerance, or if any special diet has helped. I’ve noticed on some of the EDS boards that many people do seem to have issues with gluten or other foods. My initial blood test for celiac was negative, but I’ve had the classic gi symptoms, and they did improve significantly when I did a gluten free trial this past two weeks. Then I accidently ate something that was supposed to be gluten free, and was not, and felt like I had the stomach flu. I’ve always hated restrictive diets in any way, and I love to bake, so I’m a little sad if gluten intolerance is added to the list. But on the bright side, some EDS folks have claimed it has helped some of their joint pain symptoms.
just curious… About the joint pain thing
Does it ever feel like you have a radiating pain (kinda hard to explain) from the SI (ish) area going through the hip, down the front of the thigh (feels like the pain is in the bone) into knee then shooting out your toes?
It isn’t SI pain because I have had that but a whole different issue.
I use to cry myself to sleep when I was younger 7ish because of “growing pains” also…
Vali, LOTS of GI issues with bendies. The consensus I have seen is that there are plenty of false negatives on the Celiac or just that gluten free helps. Lots of bendies have food allergies and our GI tracts are just plain sensitive. Makes sense when you think about how much collagen is in there and how much connective tissues is in there. Not to mention how much autonomic dysfunction goes hand in hand with EDS. I haven’t seen any 1 diet be THE answer to the problems, but working on food allergies does seem to be helpful.
Nootka, the growing pains story is very common. Growing is not supposed to hurt. 
I used to have really painful cramps so bad every night in my calves despite trying all the standard suggestions. I have SI joint pain, but also have memory issues so I can’t remember if I have pain that radiates down the femur. I’ll have to pay attention and see if I can confirm that for you. I do have SI joint dysfunction though. It goes out every week on a regular basis.
[QUOTE=PalominoMorgan;5943502]
Nootka, the growing pains story is very common. Growing is not supposed to hurt. I used to have really painful cramps so bad every night in my calves despite trying all the standard suggestions. I have SI joint pain, but also have memory issues so I can’t remember if I have pain that radiates down the femur. I’ll have to pay attention and see if I can confirm that for you. I do have SI joint dysfunction though. It goes out every week on a regular basis.[/QUOTE]
I have had bad bad SI issues in my right joint. It was so bad then all of a sudden one day it went away. I hope it never comes back! It is worse than any pain in the world!
Wow, memory issues? For real? Damn, I feel like I have the same issue but I linked it to Tyroid. I didn’t know that was an ED issue also. I really should find a specialist here in central FL because of the link with my sister and everything else…
My son (he died in 06-don’t know if you were around with that thread) had BAD growing pains also. Some days he couldn’t walk it was so bad.
Nootka, I was around then and remember it all too well. As a mom now I can’t imagine. As for the memory issues, not an EDS thing directly. I suspect I have thyroid issues too and I have a ton of secondary issues, including REM sleep issues. Plenty of reasons to have no memory. Not all EDS’s fault.
Sorry to welcome you to the zebra club but know you’re not alone! I was diagnosed in Aug 2022. It’s been hell but horses are one thing that keep me sane <3
dont know if this is of interest but Alissa Zingman is a physician diagnosed w EDS during her orthopedic residency, and had to give up surgery. She has started an EDS practice in silver spring, md. Pricy, doesn’t take insurance and at one point had a 1 yr waiting list… https://prismspineandjoint.com/dr-zingman/
