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?
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.
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.
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tittney
130d
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?
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Acetylsalicylic Acid
Loss of weight
Ehlers-Danlos Syndrome (EDS)
Generalized pain
Chronic Pain
tittney
130d
0
shea.cheyenne
130d
2
TunaGoon
129d
1
Quari
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0
zippi
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medusozoa
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☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision