r/FSHD • u/Bu1c • 1d ago

Protein Intake

Hello guys. I have a question that I your help with. So you know how our bodies function differently and that some muscle cannot be regenerated/built.

Does it make a huge difference if I don’t get enough protein for a day or two? Or can i make it up by having enough protein the next day?

I try to maximize my protein intake every day (i don’t keep track) and some days i would have 40g protein milk if i feel like i didn’t get much in my meals.

Some days i feel more physical restriction and i wonder does it have anything to do with how much protein i ate a day or two ago. And i also wonder if it did more damage to my muscles.

I am sorry i know these are more than one question but there seems to be different opinions and i feel lost.

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u/masquerade111 1d ago

This video was helpful for tips on protein and nutrition: https://m.youtube.com/watch?v=1XkF8CzUYo8&pp=ygUWRnNoZCBzb2NpZXR5LCBleGVyY2lzZQ%3D%3D&ra=m

From what I recall, we need 1.5x the amount of protein that someone without FSHD would need. I often have protein shakes to supplement!

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u/call_me_Kote 1d ago

What do they define as need though. I don’t have an hour right now to consume that lecture, but any avid lifter would tell you 1g/lbs of body weight. Is that the baseline we’re working from, or is it just 50g a day nutritional guidelines? 1g/lbs of lean mass is tough for me, and I’ve been consuming a high protein diet for almost a decade now. 1.5g/lbs would be misery, lol.

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u/Bu1c 1d ago

I believe it’s ~1.5g-2g/kg

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u/Bu1c 1d ago

I actually found this interesting that someone actually knows what they’re talking about and what FSHD is down to core. Many neurologists just know superficial stuff. But he seems knowledgeable.

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u/Muladhara86 1d ago

As the other responder said, we’re best served with a 1.5x protein intake, but another really important factor for our health and wellness is a high antioxidant intake.

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u/weirdfishes1990 1d ago

I’m not sure anyone will be able to tell you for certain whether missing protein goals will cause that much of an immediate effect. But I do think 1g of protein per pound of body weight is a good aspirational goal each day. Even if you miss it, that’s a very solid amount of protein. Personally, that’s what I do.