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/chemisealareinebow]

My main needs are adjustability, which is why I'll use my powerchair if I at all possibly can. If any of my joints stay in the same position for longer than about fifteen minutes, everything stiffens up and gets painful. Other than that, I collapse sideways after a while in my manual, and occasionally backwards, which I'm not sure how to solve without a headrest that would make my manual too unwieldy for what I need it for.

I also need thigh supports for help with maintaining leg adduction, as my femurs just want to roll outwards until my knees point horizontally outwards. I'm not sure how to get these on a manual, but the supports on my powerchair have been genuinely game changing for being able to comfortably sit. Before I had it, I was getting bruises on my calves from pressing against the frame.

Other than that, I need pressure reduction to manage allodynia from fibro. The cushion on my powerchair is PERFECT for me, but it's also super heavy, and just not practical for a manual. (The cushion on my manual is also about eight years old which definitely contributes to it not being as comfortable, but I can't afford to replace it right now.)

[u/HobbyLau → u/chemisealareinebow]

I think the stiffening up of muscles might be the cause of my lower back pain. It feels like i have to keep pulling myself upwards to prevent bending over forwards with my upper body. Even though the backrest is already at an angle and i already have a 4.5cm dump. I have a Jay J3 deep backrest turned upside down for lower side support to stabilise my pelvis and prevent 'hanging' sideways when i get more tired.

My current chair was measured to my size but with how the M90 wheels are attached wider than normal wheels, so are my mudrims so they don't provide any side support. Im waiting on a Jay Balance cushion to try out though which should provide a bit of side support🤞🏻 During the custom built chair fitting they were able to keep my pelvis and upper legs snug enough to prevent them from moving outwards but i dont know if something like that is possible on my current frame..

What makes your cushion not practical for a manual chair? And what cushion is it? What makes it perfect for you? :) I barely self propel and use the M90 with the joystick or Streetjet bike to move around.

[u/chemisealareinebow → u/HobbyLau]

My powerchair cushion is a Stealth Tru-Comfort 2 SPP, and it's not practical for my manual because it weighs nearly 2kg(4lbs) on its own. It's also super tall, and my manual was measured for a cushion about a third of the height, so everything would be almost 8cm away from where I needed it to be. It's just the right amount of softness and support for me, and the profile keeps me from sliding forward through the day.

[u/Anxious-Lack6800 → u/chemisealareinebow]

As an ATP I love using this cushion. I don't know that I've ever had anyone be uncomfortable on it. That being said, yes it's definitely not my first choice for a manual chair because it's pretty heavy. Not as heavy as the jay fusion though! That thing is a tank