Hi, have they ruled out SYRINGOMYELIA? It can be a reason you might be getting these symptoms of paresthesia. We, those with Chiari are all different even when we share a condition or some of the symptoms. Each one of us will have a very different journey then someone with the same conditions and same symptoms, something will cause it to be different...it could be your threshold for pain will be different, how you perceive your situation and handle that stress will also be different. Expect things to change, as you need to change with your changing abilities when you are in pain/discomfort.
Good luck with your EDS testing....I also have EDS along with my Chiari and tethered cord, Hashimoto's, and a partially retroflexed odontoid. It can get difficult to know what symptom is caused by which condition.