To sit upright is exhausting

[Mneutz]

Hello,

I have SCA 6. Recently I’ve noticed sitting upright in a chair makes me very tired after 2 hours. When a side sit body leaning to left I’m not getting exhausted. Does anyone else feel more comfortable in this position? Does anyone else get really tired sitting up?

Thank you

[edfosho]

Hey,

I have a SYNE1-related spinocerebellar ataxia, and I find it difficult to sit upright - often causing me to slouch without realising it.

I have got a Capisco Puls chair for desk/office use, which I find useful. Attached is the various ways you can sit on it.

(disclosure, I'm not an expert with this stuff, consult with an occupational therapist if unsure about office chair use)

Capisco Puls desk chair

[Mneutz in reply to edfosho]

Thank you. Unfortunately I was an operating room nurse, 27 years. I had to retire last year. I never sit at a desk. I was at an outside party sitting in a chair and had to leave after 2 hours. My eyes want to shut they get so tired. I wanted to stay but body said NO. I’m going to look into the Vit. B12 injections. I take 5,000 mg pill form now.

[cocoa in reply to Mneutz]

Vitamin B12 injections have helped me but I have to pay for them privately.

I also find that I need a good chair to support my back. I have a "Stressless" chair with foot rest. Going out is a problem though.

[paul456]

Hi Mneutz

Hope you are as well as you can be.

I have SCA 6 diagnosed in sept 2019 after 143000 visits to the medical world.

I’ve not experienced this but as you know any brain condition can cause tiredness/fatigue because of several different reasons, lack of sleep, using more effort to do every day activates, pain, dehydration etc.

My best guess which is probably crazy is for some reason you are using more effort to sit upright than you are leaning therefor getting tied quicker. If you list all the things that can make you tied and therefore ruling other reasons out, you may only be left with one or two therefore come up with a possible reason by process of limitation.

Hope this makes sense. Lol

Stay strong my friend.

Who Cares Wins.

[Mneutz in reply to paul456]

Makes sense. I just wondered if anyone else had a similar experience. Thank you

[paul456]

I wish I had a brain I could then spell and make sense. Before I had SCA 6 I was a 6’ 4” muscle bound swim ware model with a IQ of 543. Scary what the brain can do 👹🤣

[BlanketTime1]

due to dystonia, i've found certain positions more comfortable than others. i will say when ataxia returns (mine comes and goes) it's very hard for me to sit up and after about five minutes of moving around, i'm exhausted. i think it's because our bodies have to work harder to do things due to a lack of coordination. *sigh

[Mneutz in reply to BlanketTime1]

True 😔 thanks

[Driven1]

Need to keep moving, get up out of chair, get a FitBit to remind you to move. Any activity is the best medicine for the human body. We were Hunter Gatherers years ago, always on the move. Not sitting around for 2 hours. Read Harvard review on sitting. Will destroy your body. health.harvard.edu/pain/the...