is there any way or device that can help grow muscle or maintain it without exercise?

[Rlman]

@Pearshaped i haven't been assessed for EDS though was thinking about it. the joint issues only started past 2 years so thought its maybe related to muscle atrophy, which is what my drs are saying. i thought though it was something related to ligaments, the joint injuries don't feel like muscle but who knows...

 

[pattismith]

i might have energy for a bit of contracting if i dont have to be standing. however i am worried the joints would still get injured. doing quad sets caused my knees to get injured, and they now feel emptier and have less tension in them than would usually have, as if i lost tissue that is supposed to be in the joint. idk what happened, did muscle rip and waste or ligament looser? idk, so weird.

TENS are electrical stimulation to relieve nerve and muscle pain. Not sure if this could help rebuild muscle but it may help you, especially if you try to exercise a bit.
https://www.cochrane.org/CD011976/S...rical-nerve-stimulation-tens-neuropathic-pain
https://www.thegoodbody.com/what-does-a-tens-unit-do-for-muscles/

 

[skandar]

Hi all,
my muscles seem to be breaking down and are very wasted throughout my body, and anytime i try to do any physio exercise my joints get injured. all joints all feel looser too and its getting hard to sit upright. i am mostly bedroom bound due to severe weakness and fatigue the past 8.5 years. neuromuscular clinic ruled out a myopathy. is there anyway to get the muscles to grow that doesn't involve exercise?
Thank You for reading this post.

@Riman Unfortunately, there just isn't a way to maintain muscle mass without muscle contractions. This is based on the current primary scientific literature. In theory, I agree with the person who mentioned nandrolone decanoate, but you'd need to be under the care of an endocrinologist to be safe. I hope you are not being hard on yourself about the muscle wasting.

 

[Pearshaped]

"Use it or loose it" is not an option for many PwCFS.
But contracting certain muscles here and there while lying flat is better than nothing I suppose..
@Riman I don't know much about EDS but it came to my mind as I read your post. Hope you ll find a way to get back to (some) strength without overdoing it.

 

[Wishful]

Would this not create the same problem we have now? Ie electric stim causes muscles to contract causing energy to be used up, etc. Unless the problem is upstream.

At this point we don't know whether it would cause problems or cause benefits. It's an area for experimentation. Since there are some cheap units available, it seems a reasonable experiment. If @Rlman is really financially challenged, one can be built for a few dollars in parts, and aluminum foil for pads. Plenty of very simple circuit diagrams online, and if he's not up to building one himself, it shouldn't be too hard to find a friendly hobbyist nearby.

It sounds like Rlman isn't prevented from exercising due to low ATP or PEM resulting from it, but from the mental effort needed to make the muscles move; overcoming the perception of weakness and fatigue. EMS makes the muscles contract no matter how you feel. If weakened connective tissue is an issue, the EMS could be started at a low level, and gradually build up the strength of muscles and tendons.

If it works somewhat, it might be worth getting a fancier unit with whatever nifty functions are available, but a cheap one (or homebuilt one) should be enough to figure out whether it seems to help. Since he's lacking in other options, it seems like a reasonable experiment.

 

[Rlman]

It sounds like Rlman isn't prevented from exercising due to low ATP or PEM resulting from it, but from the mental effort needed to make the muscles move; overcoming the perception of weakness and fatigue.

@Wishful, i am also very limited in how much exercise i can do due to low ATP and PEM (i can't walk more than a few steps or stand more than a few seconds at a time-mostly bedroom bound), but yes i could probably do a few contractions of muscles if joints wouldn't get injured upon doing them. Often though i have been too weak to even do contractions. in earlier years of the illness when i had lots of muscle, i would get severe PEM from just stretching a bit. Now though i think i could do a few contractions.

 

[Likaloha]

Hi all,
my muscles seem to be breaking down and are very wasted throughout my body, and anytime i try to do any physio exercise my joints get injured. all joints all feel looser too and its getting hard to sit upright. i am mostly bedroom bound due to severe weakness and fatigue the past 8.5 years. neuromuscular clinic ruled out a myopathy. is there anyway to get the muscles to grow that doesn't involve exercise?
Thank You for reading this post.

When my grandmother had her knees replaced and when I had my knee surgery we both were attached to constant passive motion machines (cpmm). Your joint or extremity is strapped in and the machine moves it for you...you just sit/lie there while the machine does all the work...I assume this must be prescribed by a physical therapist and don't know if insurance covers it or what conditions might warrant it. Good luck!

 

[Wishful]

The cpmm technique might be to heal the incisions with a full range of movement, rather than preventing muscle atrophy.

 

[Likaloha]

The cpmm technique might be to heal the incisions with a full range of movement, rather than preventing muscle atrophy.

I guess you are right...I know I had some muscle atrophy since I had lost lots of function in my knee and my grandmother had lots of atrophy due to arthritis, age,pain, etc..Thanks for the reply!

 

[Wishful]

i am also very limited in how much exercise i can do due to low ATP

That comment keeps popping up in my thoughts, because I think it might not necessarily be true. Not that it can't be true, but without an actual blood/muscle test under load, it's not the only explanation for what we feel as physical limits. There could be a problem with the signals sent from the brain, or with signals received in the brain, or some other physical or chemical problem not related to ATP levels. Our brains do get signals from the muscles that we interpret as fatigue levels. What if the interpretation part became overly sensitive, so that even the slightest signal of fatigue became interpreted as "100% fatigue, can't possibly do any more"?

An EMS unit would be a good test of that, since it would bypass the brain's involvement. If your muscles really are limited by ATP production, your muscles should quickly and gradually stop contracting from the EMS pulses. If your muscles continue to contract the same amount, then it's not ATP limitations. If your muscles continue to twitch fully, but trying to move the muscles intentionally gives you the "there's no energy left in the muscle" feeling, then it would more likely be a brain function problem. Not psychological, but a problem with nerve signals.

If EMS triggers PEM, it's possible that starting with low level sessions (intensity and/or duration) could gradually rebuild your tolerance for muscle exertion without triggering PEM. EMS might not prove effective for you, for one reason or another, but wouldn't it be nice if it did work?

PWME have a vast number of potential treatments that we could try. Many of them are expensive or difficult, and very many of them have very low probabilities of working, and many have significant probabilities of negative effects. Some however, are fairly cheap and easy to try. Some can also be beneficial in terms of discovering something that you should avoid. For example, if EMS showed that even slight exertion caused significant problems, you might want to figure out ways to avoid the exertion of bathroom visits or washing.

I'm not a proponent of EMS (I don't have one). However, since you asked for suggestions, EMS seems like something worth trying. If you do try it, please post the results so that others in a similar situation can decide whether it's worth trying too.