• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Muscle stamina/fatigue - what works?

Strawberry

Senior Member
Messages
2,100
Location
Seattle, WA USA
I obviously don't want to crash from over exertion, but I would like to see if I could help support my muscles just a little bit. Is there anything (supplement or other) that has worked for people to increase muscle stamina or fatigue? My cousin is trying Mestinon which got me thinking of this.

Just for clarification, muscle strength is not my issue. It is the fact of walking a block or standing for one minute and I feel thoroughly exhausted and feel I need to lay down. I'd like to just stretch that time length out just a bit. Also reminder to anyone that read my Hawaii thread, I have huge improvements in stamina in Hawaii. Linked to fewer allergy triggers, no air pollution, and hey, I'm on vacation! But living in Hawaii isn't an option. I would just like to feel a little closer to how I feel there, while still working in pollution and allergen filled Seattle.

Trying to heal teeny bit by teeny bit.
 

Gingergrrl

Senior Member
Messages
16,171
The only thing that has vastly improved my muscle strength was high dose IVIG (but am not sure if this would pertain to you)? Are you able to open a door or water bottle or cut/staple papers, etc?
 

Strawberry

Senior Member
Messages
2,100
Location
Seattle, WA USA
@Gingergrrl Yes I can open water bottles and doors, but say it is one of those very thin plastic bottles with teeny plastic saving lids that are near impossible to open, I might have to take a break after attempting to open for a minute due to local muscle fatigue. After a minute or two of rest, I would be able to open it though. For me it is more the repetitive issue that makes my muscles rapidly fatigue. I could also open a very heavy door easily. But not 10 times in a row.

Another example I just thought of. I could be tapping out a beat, and suddenly find that I can no longer tap the rhythm because my fingers are too tired (I'm a musician, I should be able to keep rhythm). And by the time I am done brushing my teeth, my arm is definitely worthless and needs a rest.

I am so glad the IVIG has helped you so much, and I am 100% rooting for the RTX to work too!


@taniaaust1 Thanks for the tip on undenatured whey, I will have to look up what that is! I'm not 100% positive that I have OI though. I definitely don't have POTS as my heart rate rarely gets to 120. I've just been told to drink salt water, which doesn't seem to do anything noticeable. I also use nuun tablets, but not sure if they help me either. It is extremely minimal if either help.
 

Strawberry

Senior Member
Messages
2,100
Location
Seattle, WA USA
@Mary I haven't tried that, but it looks like it is a sugar, so I could add it to my whey? That sounds promising also.

@ebethc I have done minimal reading today, but I thought that I read whey had something to do with BCAAs? Am I wrong? Another really good idea though. Maybe I saw a powder on Amazon that had bcaa's included. Not sure.

I'm glad I started this thread. I don't usually read threads that I know nothing about. So now I have learned of whey, d ribose, and next read is BCAAs.

I'm gonna get there. I can feel it!
 

ebethc

Senior Member
Messages
1,901
[
@ebethc I have done minimal reading today, but I thought that I read whey had something to do with BCAAs? Am I wrong? Another really good idea though. Maybe I saw a powder on Amazon that had bcaa's included. Not sure.

I'm glad I started this thread. I don't usually read threads that I know nothing about. So now I have learned of whey, d ribose, and next read is BCAAs.

I'm gonna get there. I can feel it!

BCAAs are cheap, too
 

Mary

Moderator Resource
Messages
17,321
Location
Southern California
@Strawberry - yes, you can add d-ribose to your whey. Sarah Myhill recommends adding it to coffee (if you drink coffee) because the caffeine potentiates the effect of the d-ribose. I put it in my morning coffee. I take about 15 grams a day - 7.5 in my coffee, and 7.5 after lunch. It is a little pricey, but it's worth it. I've found the best price is buying it in bulk - e.g., this is a good product: https://www.amazon.com/BulkSuppleme...=UTF8&qid=1500678286&sr=1-4&keywords=d-ribose

Here's what Sarah Myhill says about d-ribose: http://www.drmyhill.co.uk/wiki/D-ribose

Also, have you looked into the other things she mentions such as CoQ10, l-carnitine, and magnesium? CoQ10 has helped many people, although I seem to be able to make it on my own. However, l-carnitine at one time helped a lot with energy.

I've read that BCAAs help some people with energy. They didn't really help me with energy per se, but, they cut my PEM recovery time in half, which is huge. So hopefully they would benefit you too in some way.

As I'm sure you know, it's good to only start one new thing at a time, so you will know what is doing what to you - good luck!
 

Gingergrrl

Senior Member
Messages
16,171
I was curious to all in the thread, do any of these products (Ribose, Whey or BCAA's) help with increasing actual muscle strength or are they more for fatigue? Like if I am not strong enough to open a child-proof pill bottle (sadly for real), would they help with that?
 

Strawberry

Senior Member
Messages
2,100
Location
Seattle, WA USA
Bumping this for @Gingergrrl question and because I am curious also!
@Mary @ebethc @taniaaust1

I also am curious as to trialing these. I just started liquid coQ10 a couple of days ago (ubiquinone, Qunol brand so maybe not the right stuff), but received my whey today ( https://simplyteras.com/product-categories/organic/ ) (note to tania that they have goat whey, have you tried that?). I have not yet ordered the d-ribose, I will very soon though. Should I try these one by one? If so, how long? Should I stop the coQ10 and try the whey only to see if it helps? I'm so desperate to get some energy back, but I want to be spending money on what WORKS. If all 3 work that is fine, but I don't want to take all 3 just because I have no idea which is benefiting and which isn't.

BCAAs are cheap, too

Have you tried them yet?
 

Gingergrrl

Senior Member
Messages
16,171
Thanks for bumping this @Strawberry and I had actually forgotten about this thread! I am still curious though if any of these supplements increase muscle strength (vs. fatigue and energy).
 

Mary

Moderator Resource
Messages
17,321
Location
Southern California
@Strawberry - in general I've found it's a good idea to only introduce one new thing at a time, so that you will know what is doing what to you.

Re CoQ10 - it never really helped me with energy. And actually the testing I had done by Sarah Myhill showed my CoQ10 was on the low side of the normal range. But - I know it has helped many people. I also know that the proper dose can make all the difference. I think if I were you, I'd find out how much people were taking to get results. It'll probably just take some experimenting to see if it will help you. I'm guessing that 2 weeks would be a good enough trial to see if you get any results. But again, the dose is very important. 100 mg. might not do anything; 400 might. Ask others how long they had to take it before they noticed anything.

Same with the whey, ask those who it has helped how much they had to take for how long. I don't have that answer either.

But for the d-ribose - I noticed a difference I think in one day, 2 max.

And it took a week for the BCAAs to cut my PEM recovery time in half.
 

ebethc

Senior Member
Messages
1,901
I tried whey (tera's brand) to try to increase glutathione.... I did not notice any difference at all so I dropped it
  • Energy/Fatigue - no change

No change w coQ10 or ubiquinol, BUT I was extremely fatigued when I tried it, and I find that when I'm really run down I just need a lot of rest first because nothing will help when I'm that exhausted... Sequence is important for me, so I feel well enough to try it again at some point... Not at the top of my list, but close
  • Energy/Fatigue - no change

d-Ribose and NADH were helpful, but I felt like I needed address underlying fatigue... It did help me get through the day if I had something I had to do..
  • Energy/Fatigue - mostly a mild-moderate increase cognitive energy immediately and effects lasted for few hours; no cumulative effect, ie, I didn't feel like it was healing anything... def a bandaid.


BCAA's are at the top of my list to try (I haven't gotten around to it yet..)... Partly because of the good things I've read, and partly because they're cheap
  • Energy/Fatigue - tbd
 

Mary

Moderator Resource
Messages
17,321
Location
Southern California
I was curious to all in the thread, do any of these products (Ribose, Whey or BCAA's) help with increasing actual muscle strength or are they more for fatigue? Like if I am not strong enough to open a child-proof pill bottle (sadly for real), would they help with that?

Hi @Gingergrrl - I don't think the d-ribose or BCAAs actually increase muscle strength. The d-ribose helps with the production of ATP for energy. I think the BCAAs may do something similar. Actually the BCAAs didn't really increase my energy per se, but they cut my PEM recovery time in half. When I first started crashing in 1998, I'd be down for 3 or 4 days after overdoing it. Very gradually over many years the recovery time got whittled away down to 2 days. And then the BCAAs cut that in half. It felt like a miracle. (it still does!)

Though I think the BCAAs may help Sushi with energy as well, am not sure.
 

Mary

Moderator Resource
Messages
17,321
Location
Southern California

ebethc

Senior Member
Messages
1,901
Total honesty I tried coQ10 before and did nothing. I got up to about 400mg. But if it helps the mitochondria (which I do feel is my predominant problem now) then its worth trying for a while. I bought costco sized bottles.:rolleyes:

have you read how long you're supposed to take it? I'm so sensitive to supps and meds that I tend to be quick to judge, and generally that works, but sometimes I may be missing out..
 

Gingergrrl

Senior Member
Messages
16,171
Hi @Gingergrrl - I don't think the d-ribose or BCAAs actually increase muscle strength.

Thanks, Mary, and I was just curious. When I first got sick, I took D-Ribose for over a year and it did absolutely nothing for me. But I have not tried whey or BCAA's. I was wondering if there is something that will give my muscles the final push so I open child proof bottles or hold a hairdryer (just as an example). I'd like to strengthen my diaphragm/breathing muscles further as well. So far (for me) only IVIG has been able to do this but it's like I am at the mid-way point and am hoping it can still do a lot more!