Muscle atrophy not related to disuse

viggster

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Hi all - One of my most troubling problems is visible muscle loss. It started about 6 months after I got sick with a sudden fever, and it's accompanied by muscle pain and visible twitches (fasciculations). I've been worried about ALS but I've had four EMG's between Sept 2012 and May 2017 and all have been normal. That's good, but so far there's no explanation for the atrophy. I've heard a few other men with ME mention atrophy. Anyone else have this problem? Has anyone been able to stop or reverse it?

Thanks.
 

Tammy

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I have had both muscle atrophy as well as visible twitches at different times throughout the course of this illness. I no longer have those symptoms but I couldn't tell you exactly what helped as I have taken many different things. At one time I also thought I had ALS ............so I understand your worries..............but here I am 20 yrs. later.
 

Isaiah 58:11

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I have had the same intermittently for the past 12 years.

There are times I have stood and collapsed to the floor, seeing an indentation like a triangle above my knee. If this happens and I do anything requiring effort in the following days I will typically lose the strength of certain muscle functions. I used to get them back with effort, but I haven't seemed to lately.

Other times I have a sort of crisis where my heart function seems to tell me I am near death. Lying down immediately, being as cold as possible, and eating a (salty) cracker at a time until an entire sleeve is finished followed by slowly sipping water seems to help in that situation. That is usually followed by a few days of severe muscle wasting.

I have also just lost muscle slowly over time, but in a way that other sedentary people don't seem to; you can, for example, see every rib in my chest now.

Over the years, they have found my CPK/CK to be over 2,000 a few times (other times normal), but never at a time of crisis (because then I am too ill to go anywhere at all!) You might asked to get that checked if it hasn't been already?

I hope in some way this reassures you. When this first started I was told I must have a neuromuscular degenerative disorder and it was terrifying, but over a decade later with no real diagnosis/explanation or treatment and it has only been in the past year that my problems turned the corner towards doom. The odds are that you don't have something quickly catastrophic. I have been limited by a lack of money for healthcare (I have thought at times during crises that a funeral would be cheaper than a hospital visit!), but it sounds like you have doctors looking for answers. So be hopeful knowing many of us have experienced similar and do not have a dread diagnosis. During my remission I was actually able to add some muscle back. That must mean something good!
 

PatJ

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I have lost muscle and fat. I was 160 pounds in 2003 when I had my first CFS/ME 'episode' that kicked off my slow decline. By 2005-6 I was around 140 lbs. Around 2010 I hit 98 pounds. A few days ago I was 116 pounds. Even though I eat a normal amount I still rarely gain weight and can rapidly lose it.

The only things that have helped me to maintain, and gain a little weight are protein powder and maltodextrin (NOW brand carbo-gain). Dates can also help with weight gain but that might be from the sugar content.

HMB (Hydroxymethylbutyrate) is known to help prevent muscle wasting due to catabolism. I've tried it a couple of times and get pain in various areas of my body so I'm avoiding it for now. I've never read of this being a side effect from HMB, it's generally considered safe so it might be something for you to consider.

The muscle twitches and pain might be relieved by supplemental magnesium.
 

PinkPanda

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I haven't experienced that myself. I'm sorry this is a bit unspecific, but I was thinking that problems in energy production can lead to increased breakdown of amino acids for energy production. This might lead to muscle breakdown in some people.

Here is a thread from a forum where someone with peripheral neuropathy had muscle loss due to vitamin B12 deficiency.
Vitamin D and vitamin b1 deficiency might also be related to increased muscle breakdown.
So in general, maybe looking at some nutrient deficiencies that can cause muscle loss and are important in the energy metabolism could help?
 
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RYO

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@viggster - I am glad to hear that your EMGs are normal. I have experienced some atrophy of my lower extremity muscles. I constantly twitch and suffer from chronic aching pain. I have used topical testosterone in the past but you have to watch out for fluid retention, secondary polycythemia and higher risk for DVT. There may also be higher cardiovascular risk. I tried using TENs unit on my legs but it triggered severe PEM. You may want to consider experimenting with low intensity and short duration TENs using small pads.

Taking magnesium supplements never helped my fasciculations. SC IVIG aggravated my muscle fasiculations. My muscle symptoms also worse during relapse. Also no change with various whey protein supplements.

It's frustrating that researchers at NIH and OMF have yet to focus on studying muscle tissue from ME/CFS patients.
 

Kati

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Hi all - One of my most troubling problems is visible muscle loss. It started about 6 months after I got sick with a sudden fever, and it's accompanied by muscle pain and visible twitches (fasciculations). I've been worried about ALS but I've had four EMG's between Sept 2012 and May 2017 and all have been normal. That's good, but so far there's no explanation for the atrophy. I've heard a few other men with ME mention atrophy. Anyone else have this problem? Has anyone been able to stop or reverse it?

Thanks.
Have you had a muscle biopsy?

Mine showed slow twitch fiber atrophy. It was done within 3 years of onset. I cannot say i have had obvious muscle atrophy though.

It would be interesting to study this subset of patients, especially the metabolomics.
 

viggster

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Thanks, everyone, for your input. This is good for me to hear in terms of understanding that my situation may be completely ME-related. Although it's not good to hear about all of the muscle problems you've had. I think muscle should be more of a focus of NIH research, and I'm going to have a conversation with the lead researcher about it at some point in the near future. It seems like it's not uncommon to have atrophy, and of course many ME patients experience weakness. If it's not neuromuscular (e.g. an EMG looks normal), then something peculiar is going on.

@Kati No muscle biopsy, although last I heard NIH was considering adding it to their intramural study (which I'm participating in). After your biopsy, was any treatment recommended for that problem?

@PatJ thanks for the tip on HMB. I had not heard about that supplement.

@RYO What is a TENS unit?

@Isaiah 58:11 NIH tested my creatine kinase and it is elevated, although it's not crazy high. My doc thought I might have inclusion body myocytosis (rare, degenerative muscle disease) but the muscle MRI and EMG were normal. So I spent five days thinking I may have IBM but nope. My only diagnosis is still ME/CFS.
 
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RYO

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@viggster
Transcutaneous electrical nerve stimulation (TENS) is a therapy that uses low-voltage electrical current. You can purchase one on Amazon.
 

Kati

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@Kati No muscle biopsy, although last I heard NIH was considering adding it to their intramural study (which I'm participating in). After your biopsy, was any treatment recommended for that problem?
Unfortunately, they quickly lost interest once they were assured that my MtDNA was all good and that I didn't have any genetic mitochondrial disorder. See, the mitochondra clinic only deals with genetic cases.

A diagnosis of ME/cfs gets in the way of digging deeper in my area. Seemingly once you have it, there is nothing the doctors can do for you :( (at least in Canada)
 

RYO

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I also had muscle biopsy 3 years ago. Like @Kati, they ruled out mitochondrial disease and they also found no evidence of inclusion body myositis. Whether it is USA or Canada, no one went further with additional muscle studies. I found a special lab at Baylor and a researcher who looked for but was unable to find viral genetic material in my muscle sample (coxsackie, parvo virus, etc)

I am not sure the NIH will add muscle biopsy but I reached out to Linda Tannenbaum at OMF and offered to undergo another muscle biopsy if a researcher was interested.

I suspect the issue is funding. (Has anyone had any success in writing a letter to Warren Buffett foundation? I have heard that the Gates foundation does not deal with individuals)
 
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RYO

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To those on this thread, how long can you stand or walk before becoming symptomatic?
 

Kati

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To those on this thread, how long can you stand or walk before becoming symptomatic?
It depends. Some days, just a couple of minutes. Other days, more than that.
There are many factors at play, orthostatic intolerance being one.
 

Gingergrrl

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To those on this thread, how long can you stand or walk before becoming symptomatic?
Prior to IVIG, I could stand for about 30-60 seconds. Now I would say 5-10 minutes inside of my apt on most days, and this is multiple times throughout the day, not just 5-10 min once per day.
 
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Hi @viggster. This makes me think about the evidence Fluge and Mella found for men breaking down their muscles to provide sufficient amino acids in the blood. I've always had low muscle mass and been surprisinlgy thin for how inert I am. I also had a remission once around the time I ceased being vegetarian.

If you look at @ChrisArmstrong 's recent symposium presentation you can see his hypothesis for a dysbiotic gut reducing blood nutrients and turning on AMPK. Armstrong et al work closely with my doctor who suggested to me amino acid supplementation in the form of hydrolysed whey protein isolate.

The idea is the aminos can be used downstream of Fluge and Mella's hypthesised PDH blockage. Armstrong's presentation suggests that the supplementation can also prevent the triggering of AMPK, which works with mTor to control cellular metabolism (including entering low energy states) and immune responses.

I have been taking whey powder daily for about nine months now with a pretty pronounced effect on PEM (plus an increase in my exercise envelope and an icnrease in muscle mass). I'd be interested to hear if you've tried hydrolysed whey protein isolate and whether it has had any effect. For me it doesn't prevent PEM starting if I do a lot. But it can turn a 3 day PEM episode into a 2 hour episode. I love it. It does not work for everyone but there is, anecodtally, a subgroup for whom it has been shown to be useful.
 

viggster

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Hi @viggster. This makes me think about the evidence Fluge and Mella found for men breaking down their muscles to provide sufficient amino acids in the blood. I've always had low muscle mass and been surprisinlgy thin for how inert I am. I also had a remission once around the time I ceased being vegetarian.

If you look at @ChrisArmstrong 's recent symposium presentation you can see his hypothesis for a dysbiotic gut reducing blood nutrients and turning on AMPK. Armstrong et al work closely with my doctor who suggested to me amino acid supplementation in the form of hydrolysed whey protein isolate.

The idea is the aminos can be used downstream of Fluge and Mella's hypthesised PDH blockage. Armstrong's presentation suggests that the supplementation can also prevent the triggering of AMPK, which works with mTor to control cellular metabolism (including entering low energy states) and immune responses.
This is very interesting - thank you for the info. I'll try the hydrolyzed whey powder and see what I notice. My PEM is much better than it was a few years ago, but it sounds like there could be muscle benefits as well. Great to hear it's made a big difference for you.
 

Valentijn

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I have been taking whey powder daily for about nine months now with a pretty pronounced effect on PEM (plus an increase in my exercise envelope and an icnrease in muscle mass).
I felt a bit better on whey powder for a while ... then developed an intolerance of it :( But my intolerances have improved since then, I suppose, and taking digestive enzymes seems to help in general, so maybe I'll try it again.
 

PatJ

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long can you stand or walk before becoming symptomatic?
I can only stay upright for 45mins to an hour before OI symptoms become bad enough that I need to lie down for at least 80 minutes to recover. Standing starts to become uncomfortable within a couple of minutes due to poor blood pressure control. If I'm upright I need periods of sitting, or moving around (presumably because leg muscle movement acts like a pump to help blood circulate).

When moving I have to be careful not to move too much within a short time. I can walk 20-30 steps, stop and do something, then do another 20-30, but if I did 60 continuous steps my muscles would object and I would be setting myself up for PEM. A couple of months ago I tried roughly 60 steps, waited for about 30 seconds, then did another 60 steps (which included going up 10 stairs, slowly). The result was that I had PEM quickly after, and more difficulty walking for the rest of the day. PEM lasted until late the next day.

This is such a contrast to my 73 year old Aunt who easily goes for 3 mile walks and recovers by having a short rest and some tea.
 

Gingergrrl

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I felt a bit better on whey powder for a while ... then developed an intolerance of it :( But my intolerances have improved since then, I suppose, and taking digestive enzymes seems to help in general, so maybe I'll try it again.
How do you eat or drink the whey powder? Do you mix it with water or another liquid or put it in food? Sorry if stupid question?!