My Story: Getting Diagnosed With EDS

Today, host Raimy talks all about her 22-year-long diagnosis process, not being believed by doctors and how she finally got diagnosed with Hypermobile Ehlers-Danlos Syndrome. 
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[@zebraflora747]

Thank you for this podcast. I am currently in the process of getting assessed for hEds. I, like you, have been diagnosed with fibromyalgia and benign hyper mobility syndrome among a host of other diagnoses. I have been bounced from one specialist to another to another for the most of my life. I am 51. I am continuing on this journey of seeking diagnosis for my son who is 16 and already on a wait list for a pain clinic. I have been laughed at and dismissed by my rheumatologist until I had him do the Beighton score. Then he begrudgingly gave me the benign hypermobility diagnosis. He refused to complete the rest of the evaluation and said “what difference would it be anyway if you had EDS” . Knowing is everything. It would validate all of my suffering. And if I have classical ( which I may have) it would mean a genetic link which could in turn help my son. Thank you spreading awareness.

[@ebonypatterson6714]

Oh my god I had a near identical experience at Bath rheumatology same diagnoses. I have a 9/9 Beighton score, very stretchy skin and excellent muscle tone so their insistence that I only dislocate because I need to strengthen my muscles doesn’t wash with me, also dealing with CCI, dystonia, GERD, prolapse, possible hernias, dysautonomia, visua disturbances, scoliosis, slipping ribs, being investigated for mvp and ad had a 24 hour holter and waiting for echo.

[@sickofitpodcast]

Thank you for your comment. It's exhausting but just keep pushing for a decent doctor, just because someone's a doctor doesn't mean they know everything. No one knows your body better than you!