I read the guidelines but still wasn’t sure if it was ok to post links or not. The informative type are the links I’m interested in, such as research and links like this one. http://ohtwist.com/2015/05/24/when-else-to-suspect-ehlers-danlos-syndrome/ That one lists a lot of the comorbidities that can happen with Ehlers Danlos.I have so much on that list, but it’s not my blog, just someone I follow. I use the links to show people what I’m dealing with sometimes because I have family members who insist that I look fine.
Pain is invisible. I dislocate so many times on some days that I just lay in the bed and try not to move. I think I have a ganglion cyst on my right pinky finger now too. I did just get checked for Chiari and CSF leaks though and I don’t have them! The neurologist said that I had an “amazingly good looking neck and brain for someone with mixed connective tissue disease”. He thinks I have more than HEDS.
The symptoms I went for are likely linked to POTS. I don’t have an official diagnosis of that because my cardiologist says a tilt table test might cause issues for me and that I don’t need a diagnosis to have an issue. Hugs to all who need one.