u/Ally_alison321

So, a few years ago, my sibling suddenly lost the ability to walk and started having severe chronic pain that has significantly limited their mobility. Every specialist they've gone to has found nothing wrong, and they have been hospitalized numerous times. Medical burnout is real, and I understand why they're hesitant and sensitive to people pushing them to keep pursuing a diagnosis and weighing in on what they think it could be.

Now, I will admit I have annoyed them before in the past about seeing a rheumatologist (since they haven't seen one yet, and they are the literal joint doctors and also specialize in autoimmune stuff), so I get why he might be annoyed and sick of people throwing their two cents in.

But I've casually mentioned testing positive for hypermobile traits during my POTS evaluation, and they were able to replicate many of the movements I showed that they tested me for. Because it's most likely something that is genetic, and because they show potential hypermobility like me, if I do get a diagnosis for hEDS and they also test positive, it could have huge implications for a possible impact on their issues, because EDS affects a lot.

Anyways, pretty much I was trying to say if I do end up getting diagnosed, it is something they should definitely talk with their medical team about, as it could have implications for what could be going on. But they said they got tired of people trying to armchair diagnose them (fair, but that wasn't what I was trying to do).

Anyways, I am going to ask my autonomic specialist to refer me to a rheumatologist so I can get a proper diagnosis for whatever form of hypermobility I have (given that I also have chronic pain that can be debilitating and deal with what is probably subluxations).

So a few years ago my sibling suddenly lost the ability to walk and started having severe chronic pain that has significantly limited their mobility, every specialist they've gone to has found nothing wrong and have been hospitalized numerous times (medical burnout is real and I understand why they're hesitant and sensitive to people pushing them to keep persuing a diagnosis and weighing in on what they think it could be) now I will admit I have annoyed then before in the past about seeing a rheumatologist (since they haven't seen one yet and they are the literal joint doctors and also specialize in autoimmune stuff) so I get why he might be annoyed and sick of people throwing their two cents in. But I've casually mentioned testing positive for Hypermobile traits during my POTS evaluation, and they were able to replicate many of the movements I showed that they tested me for and because it's most likely something that is genetic and becouse they show potential hypermobility like me and if I do get a diagnosis for hEDS and they also test positive it could have huge implications for possible impact on their issues becouse EDS effects *alot* anyways. Pretty much I was trying to say if I do end up getting diagnosed it is something they should definitely talk with their medical team about as it could have implications for what could be going on. But they said they got tired of people trying to armchair diagnose them (fair but that wasn't what I was trying to do) anyways I am going to ask my autonomic specialist to refer me to a rheumatologist so I can get a proper diagnosis for whatever form of Hypermobility I have (given that I also have chronic pain that can be debilitating and deal with what is probably subluxations)