Anyone else with diffuse muscle wasting?

bread.

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Hi,

anyone else with (severe) me/cfs that has a diffuse pattern of muscle wasting/changes?

- these muscles also getting progressively „softer and dough like“?

- these muscles can not be fully flexed or get soft after a short time of flexing them?

For me this occurs in my right arm and left leg.
 

bensmith

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I am rapidly losing muscle in these last 4 months of severe and my first 4 of cfs really. Not exactly sure if i fit the bill exactly as i am unsure what you mean, but i am wasting.
 

xebex

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I would say my calf and thigh muscles are like this but not sure if it’s just from being totally inactive for so long, I also had pretty large muscles before getting sick due to being super fit cyclist and skier so I think it’s taken longer than “normal” for them to waste away. Although I’ve put on no weight since becoming inactive my muscles are definitely doughy as you describe but how do you know it’s accelerated or worse than “normal” muscles as a result of inactivity?
 

bread.

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I would say my calf and thigh muscles are like this but not sure if it’s just from being totally inactive for so long, I also had pretty large muscles before getting sick due to being super fit cyclist and skier so I think it’s taken longer than “normal” for them to waste away. Although I’ve put on no weight since becoming inactive my muscles are definitely doughy as you describe but how do you know it’s accelerated or worse than “normal” muscles as a result of inactivity?
there is wasting everywhere of course (all legs, arms, shoulders) but the doughyness and the lack of flexing capability (and also worse wasting) is only on the right arm and left leg, hence it is diffuse in nature.
 

xebex

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Ah I see, hmm my doughy muscles are everywhere but I think I have some kind of true wasting as you describe in the muscles in my back. These are the muscles that are stopping me being upright and causing me to crash if I try to use them. Do you notice a link between using those extra wasted muscles and a crash?
 

bread.

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Ah I see, hmm my doughy muscles are everywhere but I think I have some kind of true wasting as you describe in the muscles in my back. These are the muscles that are stopping me being upright and causing me to crash if I try to use them. Do you notice a link between using those extra wasted muscles and a crash?
not sure, I am very severe and can not sit for 3 years now.
 

xebex

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Sorry to hear that :( I guess I mean if you moved the non wasted arm is it less likely to cause a crash then if you used the wasted arm.

For me I am noticing that if I use the damaged muscles they seem to release (or maybe not be able to clear) toxins and that’s what’s causing me to crash.
 

WantedAlive

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@bread. Definitely a big yes for me for muscle wasting. I'm in my sixth year of ME/CFS and now severe, with the reducing activity the muscle wasting is really showing in my legs and arms. I'm quite tall at 184cm and used to weigh near 90kg most of my life, now I'm 74kg and I expect to lose more as I struggle to eat enough. I remember losing 12kg in the first 6 weeks of getting ME.

I consider ME a cachectic disease, much like the systemic inflammatory state of cancer cachexia, and late stage HIV, malaria, severe burns and sepsis. I suspect this is due to the raised levels of TNF-alpha (aka cachectin). I've studied this condition quite a bit in order to understand how I can address it, unfortunately it is quite a refractory to treatment and quite problematic.

There is a natural muscle wasting inhibitor (TNF inhibitor) used by sports people but also used with some success in older people and in cancer cachexia, called HMB (Beta-Hydroxy-Beta MethylButrate). You can buy it readily as a supplement. I've just started trialing it recently, 2-3g per day in divided doses, and so far I've found it very positive improving cognition, appetite and functionality. I supplement this with full spectrum amino acids (essential plus non-essential) both in AA's (which I have to formulate) and Collagen form.

It's too early to call HMB a success for me yet, it's only been a week, but in a few more weeks I might report on it. I often say having ME is like being stuck in the ring with Mike Tyson, you might get yourself off the floor and sneak a few jabs with some new supplement, but he only gets pissed off and thumps you harder until you're back on the mat...I'm hoping HMB won't be like that.
 

bread.

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It seems rather not the norm in me/cfs to have this diffuse muscle wasting pattern looking at the very few responses.

I wonder what @Pyrrhus thinks about it as I know he knows a lot about Enteroviruses, and the only thing I found online that resembles my diffuse wasting pattern are post Enterovirus Syndromes. Jordan Richardson writes about it in his book.
 
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Pyrrhus

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wonder what @Pyrrhus thinks about it as I know he knows a lot about Enteroviruses, and the only thing I found online that resembles my diffuse wasting pattern are post Enterovirus Syndromes
I haven't heard of diffuse muscle wasting in enteroviral infections, but that doesn't mean it doesn't happen.

I did read some interesting research that looked at persistent enteroviral infection of muscle tissue. Interestingly, the virus did not persistently infect the entire muscle, just a few spots in the muscle tissue at a time. Over time, these spots would move around, but they never expanded to include the entire muscle tissue. This is called a "focal" tissue infection, as opposed to a "diffuse" tissue infection. Very interesting viral dynamics.