My thoughts about doctors yesterday said a lot about what my appointments are like. Here are some of the “fun” parts of hEDS. When they use an automated machine to take my blood pressure, it consistently inflates to 200 mmHg which is incredibly painful … which spikes my blood pressure. So I have a version of white coat syndrome, but it’s more like “automated machine pain syndrome”. When people take it the old fashioned way, my BP is consistently pretty normal, but when machines take it, it’s often higher. hEDS also means easy bruising, so here are a couple of “post blood pressure” bruises I’ve had in the past year. 

I also have skin reactions to adhesives; this second photo was after a blood draw when I tried to remove the bandage.

And then there’s the pain scale 🙄

If I made an appointment every time I had something “go wrong” (subluxed or dislocated joint, or a sprain), I’d be there a couple times a week. The main “treatment” for EDS is endless physical therapy, so I have periods where I’m there weekly and then I get fed up with it and don’t go for a while. It’s hard to balance everything (the appointments and the time to do my exercises) and work full time.

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