What a fascinating question! I am eager to hear from others on this. I would add another question — some of us have stretchy skin, and a skin biopsy indicates abnormal collagen. We may have Classic EDS, or some sort of overlap syndrome — it is hard to know. But if the skin biopsy indicates the abnormal collagen, could those patients be more affected with what you describe? I wonder if you have had a skin biopsy? Thanks for sharing!