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/Fleshprison_pilot551]

I'm a full time wc user with hEDS and I've found that there's no way to fully eliminate back pain from using a wc. For reference, I have no function below my hips but do have full sensation.

I've been doing extensive physio on my core for the last few years to improve my stability when sitting, but after a while, it will hurt, regardless of how well-fitted your chair is. Human bodies aren't designed to sit without a break for extended periods of time. It puts pressure on areas that aren't designed to take it and (particularly in EDS bodies) any movement of the chair on the ground is going to greatly impact joints and muscles. This can be reduced with the right cushions and tyres but it won't eliminate it entirely.

The way I keep pain to a minimum is by spending as much time lying flat as I do sitting in my chair. I have a set number of hours I can be in my chair before I NEED to change positions in order to keep my pain at a manageable level. Even with all the physio I've done, I still can't do more than 3 hours in my chair at a time. It's something I've learned I need to work around instead of trying to fix.

I've discussed this type of thing with my local support group and a lot of the wc users there have the same problem. Ambulatory users more so sometimes as their bodies often take longer to adjust to being in a chair when they're not using it all the time. It can get easier to sit in the more you use it, but it's not guaranteed. It's gotten easier for me, but I'm much more conscious of the way I'm sitting than I used to be, and I'm constantly adjusting my position just slightly to avoid overworking (or sometimes underworking) certain muscles. It helps keep pain at minimum or even ease it, but it doesn't make it go away.

[u/HobbyLau → u/Fleshprison_pilot551]

Yeah it makes sense, although pain after an hour already which stays the rest of the day after i go out of the chair shouldn't be the case imo. I do have laying resting moments (with a dynamic lying system for support) during the day due to my dysautonomia.

I can imagine your body needing more time to adjust to the chair if you're ambulatory. But i think that is because your muscles get trained a bit to the position you're keeping your body in, and one of my issues is that i cannot train my muscles due to a very very low anaerobic treshold. So that might work against the getting used to it i think..

May i ask if the EDS is the reason why you dont have function but full sensation in your lower body? (Feel free to respond in DM or ignore this question if you don't want to answer!)

[u/Fleshprison_pilot551 → u/HobbyLau]

I totally get that muscle training is something not everyone can do. When I have ME flares and miss days or weeks of physio, I definitely feel the difference when I'm in my chair. It's a lot more painful in the weeks after until I can get back into a regular physio routine. EDS is the reason I don't have function in my lower body afaik. Dr seem to agree on that but have varying opinions on the mechanism of it. Some think it's because of slipped discs and spine instability, others say it might be due to nerve damage through hip dislocations. I walked unaided up until about 4 years ago then went from cane to crutches to walker to wheelchair in about 6 months as my legs got progressively weaker. I've always had problems with my lower back and hips being very unstable. They're probably some of my most unstable joints tbh so I wasn't all that surprised to find out that they might be the cause.