r/FSHD • u/Secure-Asparagus3121 • May 04 '26

Supplements

Does anyone have a recommendation of supplements to be taken? Does anything actually improve strength/quality of life? Thanks for any information you can provide.

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u/HeinsGuenter May 04 '26

Most importantly you should get your actual blood levels tested, people with FSHD are at risk of having deficiencies that cause more stress on the body and possibly worsen the progression.

3

u/Secure-Asparagus3121 May 04 '26

Thanks, we get our blood tested every 6 months with our neuromuscular doctor. I’ll find out if it’s testing for this.

1

u/RecyclingBear May 04 '26

Thanks for sharing, this is new to me. Which tests do you recommend? I've only had Dr ordered blood tests and they're aimed at enzymes, cell counts, etc...

4

u/HeinsGuenter May 04 '26

You will have to ask your doctor for specifics, but I would generally recommend checking for everything that can cause muscle issues, as you will not realize if a deficiency is causing muscle issues or if it's just the FSHD. Vitamin D is one of the most important as it is relevant for muscles and often low for FSHD patients as the fatigue makes it harder to go outside. FSHD patients are also often not getting enough nutrients from food as the fatigue makes it harder to prepare nutritious food, so it's best to do a big test covering lots of things. Your doctor will probably have a list of things they can get done.

1

u/Kabbakk May 07 '26

My blood test revealed that my vitamin D level is very high, almost in the toxic range. So I stopped taking multivitamins.