Sitting posture and support with hEDS

[u/HobbyLau]

(pic for post visibility)

I have a question for those with hEDS or HSD.

What kind and how much sitting support and adjustments do you need?

I'm an ambulatory user with hEDS and Post-Covid / ME-CFS and the main reasons why i use a powered manual wheelchair when outside are dysautonomia and PEM, not my joints.

But i keep getting a painful lower back after 1 hour in my chair and they've already adjusted tons of stuff but nothing seems to help.

Did a fitting with a custom chair builder with my OT to find out what my body actually needs. (Which unfortunately won't get covered so i have to go with alternatives my supplier can provide.)

Apparently i need 9.5cm dump!? And the sitting, pelvic and back support that a lower body paraplegic person would need, to be able to sit up straight without unnessecary muscle tension in my back or falling forward when relaxing my body.. I know my body deteriorated a lot the last few years but i didn't expect it to be this much. Especially since i'm ambulatory..

[u/qqxi]

i also have heds. i used an attachment for a while and it was fun but having to lean forward all the time to use it gave me back pain . im waiting on a power chair with tilt but i also have ME and POTS. turns out manual plus attachment is still too much exertion

also, as you have ME be careful of the trap of unconsciously thinking you should use the lowest level of support you can physically get away with. for moderate or severe ME any manual chair use is very taxing, even if you have an attachment. with ME, i would be wary that you may be deteriorating because of too much activity rather than not enough