Feeling Ignored by My Doctor Regarding EDS and Joint Instability

I went to a doctor yesterday because I can’t walk long distances or stand very long and it feels like my body is deteriorating. I’m a bit overweight but i’m black (higher bone density) with a good amount of muscle too so I sure extremely high on the bmi scale. I don’t feel listened to. He acknowledged the existence of my EDS, but basically said my only treatment options are losing weight along with expensive injections or aspirin. I brought up the option of braces for joint instability (my main concern) and he said i’d become reliant on them. He said my joints would naturally tighten when i’m 40ish, but what about now? Is this all I am gonna be able to do until then? Is this what I’m stuck with for the next 20 years?

Your answer

medusozoa

1y ago

if you're able to please try to find a new doctor:( that's definitely discriminatory

zippi

1y ago

definitely find another doctor!!! idk why doctors have such a thing for wanting people to lose weight, i am underweight, i eat healthy, and i still have extremely bad pain, almost like weight isn’t the problem? i was having the same issue with walking / standing and getting a rollator has been a massive gamechanger for me.

Quari

1y ago

Please find another doctor. This doctor definitely lacks the proper knowledge and is fatphobic.

TunaGoon

1y ago

You can try k tape, it's relatively cheap and less clunky. I like rock tape brand you can get it on amazon

shea.cheyenne

1y ago

Coming from someone with hEDS who is a bit overweight and high muscle mass, losing weight does not have to be the answer. The only thing that helped me was physical therapy and using braces during flares. I would definitely research some physical therapists near you that are familiar with EDS. Once you stabilize your joints with therapy, you can do weight training to strengthen them and decrease subluxations/dislocations.

tittney

1y ago

skew* high on the bmi scale not sure

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