My osteo said something today that touched on an idea I have been wrestling with. I find with EDS I have many types of pain so I categorize my chronic pain (usually fascia related, old injuries, central sensitized) as one thing and there is a separate category for what I call my “continuous risk for acute pain”. Today my osteo was saying when she introduces patients to the concepts of hypermobility she frames it as “a lifelong risk of sudden injury” which is an added layer onto the chronic symptoms. She put my immune deficiency in that context too, as a lifelong risk of severe infection. Does this resonate with anyone else? I find these thought experiments helpful in rewriting my narrative with language that best reflects and communicates my experiences.
Posted by laura.fregeau at 2023-09-07 15:35:45 UTC