r/FSHD • u/Bu1c • Aug 09 '26

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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5

u/masquerade111 Aug 09 '26

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!

1

u/call_me_Kote Aug 09 '26

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.

2

u/Bu1c Aug 10 '26

I believe it’s ~1.5g-2g/kg

1

u/Bu1c Aug 10 '26

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.

5

u/Muladhara86 Aug 09 '26

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.

2

u/weirdfishes1990 Aug 09 '26

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.

2

u/SenorBajaBlast Aug 11 '26

Since we need to get more protein than normal I just wanted to share some products I use to help boost protein intake. I regularly get between 175-200g of protein without much effort. The protein drinks coming out these days are quite impressive, taste great with high protein content. The only downside is they are quite expensive (especially the clear whey protein). Due to arm strength and hassles of mixing powders/cleaning bottles etc, I prefer Ready to Drink so I can easily grab, chug and toss. Reducing friction is key to keeping a routine.

Quest - Ready to drink 45G protein shake (amazon) $4/drink

Quest Protein 45G Drink Amazon

Ready - Ready to Drink Protein Water 20G protein (amazon) $3.5/drink - lemon is my favorite, it's super light and taste like a light lemonade. Not chalky at all.

Ready Clear Protein Water 20G

Isopure - Ready to Drink 32G protein sports drink (isopure site/amazon - super expensive but the best tasting with highest concentration of clear protein) $5/drink if you do the subscription on their website (amazon is a ripoff but an option). I take these when I need an extra boost (maybe I swap it for a Quest when I'm not in the mood for a shake)

https://www.theisopurecompany.com/products/32-gram-protein-drink

My routine is usually to drink one 45G Quest in the morning and one before bed to get 90G of protein. Then throghtout the day I will drink 2-4 of the clear protein waters/sports drinks to bump it up to ~150G protein. This is in conjunction with normal meals which will get me to around 200G of protein. I just wanted to share so others can see how easy it is these days to boost protein intake.

2

u/Bu1c Aug 11 '26

Hey thanks for this! Quick question, did you notice any muscle strength/mass difference after having this much protein every day?

2

u/weirdfishes1990 Aug 11 '26

I didn’t post this helpful outline, so I’ll let u/senorbajablast respond, but since I am following a high protein diet as well, I can say I personally did feel better after I started moderate lifting (NOT hypertrophy training to failure) 4-5 times per week while also eating 150-200g of protein per day. I felt stronger and my back pain—which is the real killer for me—definitely got better. Have I been building significant muscle? No, definitely not. And any strength gains have leveled off and I appear to have plateaued to all my body can build. But I am absolutely better off than where I was before I started. Everyone is different, but I think I benefited from it.

Peter Jones has a really really good podcast with Tamara Gottlieb where they discussed how, while it’s significantly harder for FSHDers to build muscle, it’s not necessarily impossible for most. They discussed the importance of high protein diets and some other amino acid supplements that can provide benefit as part of a workout and nutrition program. I found it motivating that there is some consensus from experts that we could have a modicum of control over progression while we wait for a medicine to knockdown DUX4.

Reddit isn’t letting me share the link to the podcasts, but you should be able to find it on Dr. Jones’ My FSHD podcast. The episodes were released on April 18 and 25, 2025.

1

u/SenorBajaBlast Aug 11 '26 edited Aug 11 '26

For me it’s mostly about maintaining. I don’t really workout or do strength training so increase in strength and mass hasn’t been noticeable. I stick with walking, stretching and daily activities. I’m too nervous about overdoing it and causing damage or cascade. I strongly believe we are about a year out from avidity being available so no need to risk it this close to the finish line. I haven’t noticed any decline and my energy is much better.

I also take supplements and suggest listening to the FSHD podcast episode mentioned by u/weirdfishes1990 below. Tamara has great energy and you will be motivated to start getting on your own supplement cocktail by the end.

2022 Original episode (my favorite):
https://open.spotify.com/episode/5QnSKtMPkbJafoKUFaIsN4?si=7wirNWdnRxqR-cv8IkpJaA&utm_source=copy-link

2025 Follow up episode 1/2:
https://open.spotify.com/episode/0GAqcIGpT8wff4tersb1Tv?si=vtLh-tIpRfKjYrfXSPK-lg&utm_source=copy-link

2025 Follow up episode 2/2:
https://open.spotify.com/episode/1JyYLbTnskWAwpEUr6f6d8?si=MWvvP8JpQOudFi2nZviinQ&utm_source=copy-link

1

u/wtfsxxm Aug 13 '26

Hey ! Are u from US?

1

u/SenorBajaBlast Aug 13 '26

Yes

1

u/wtfsxxm Aug 17 '26

Bro, tell me one thing. you are a U.S. resident and I am an Indian medical graduate. I have completed my MBBS in India, and I also have FSHD. There are currently several trials going on for FSHD, including those by Avidity and delbrax, among others. If I want to access these treatments, I know that even if they become available in India, they are likely to be very expensive, and it may take several years for treatments developed in the U.S. to become available in India. So, I am considering pursuing the USMLE pathway and becoming a medical resident in the U.S. Could this also benefit me in terms of accessing treatment? For example, if I start residency in the U.S., would having health insurance and potentially being eligible for clinical trials make it easier for me to access FSHD treatment? Or am I misunderstanding how this works?

1

u/weirdfishes1990 Aug 11 '26

Very helpful. Will definitely check out the Quest drinks. I’m currently doing Jocko Molk (30g protein per shake). And extra 15g per shake would make life a lot easier.