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10 Things Every EDS/HSD Patients Has Experienced

Updated: Jun 9, 2023

When you have a chronic illness such as EDS or hypermobility, you become part of a little family that knows exactly what you are going through. This is a key factor of our treatment here at Actify Physiotherapy, and we pride ourselves on our ability to connect with our patients on a more personal level.

10 Things Every EDS/HSD Patients Have Experienced

As some of our patients know, Dr. Perretto is an EDS patient herself, so along with her vast knowledge in physical therapy practices, she can also empathize with our patients, and give them the comfort of knowing that they are not isolated in this crazy medical journey.

Here are 10 things that almost all of our patients have mentioned at one point or another:

  1. When your hip, or hips, pop when you get out of a low car (use your glutes and engage your core when lunging out or into your vehicle!)

  2. When you wake up a few minutes before your alarm and you can just tell it's going to be a “low spoon” day.

  3. When you hear that friendly sound of tinnitus and realize that you are about maybe to have a POTS episode. (Carry around a nice big cold water to help bring pooled blood back to your brain if you are feeling lightheaded!)

  4. The *iconic* ankle roll that I think we have all experienced at one point or another. You’re sure it's broken, but of course it's just a sprain (#hypermobilityprobs).

  5. When you are in the middle of doing dishes and suddenly you are out of spoons - guess that silverware will have to wait until tomorrow!

  6. Seeing dairy or heavy carbs and wishing you could eat it, but knowing that it will wreak havoc on your GI system (and possibly MCAS) for the next week.

  7. Sitting down to shave your legs, or wash your hair, or wash your body, or brush your teeth, or really do anything! Sometimes by the end of the day we don’t have any standing time left in us, and that's okay!

  8. Being on a first name basis with your primary care care physician’s/physical therapist’s front desk personnel.

  9. You now can spot out a hyperextended arm or leg from a mile away. Even when watching television you are able to spot them, and then you wonder if they’re even aware or not!

  10. You have learned (or are learning) how to love your body for what it is, be patient with it, and live everyday the best you can.

And just to be clear, this list isn’t meant to bombard your already stressed mind with more possible symptoms or anxiety, instead, we want to show you that you are not alone! We are all in this together.

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