Severe muscle wasting not explained by inactivity?

[Ocean]

Does anyone else have this symptom or have any ideas about this symptom? From what I can gather, I don't think many seem to have it.

When I got sick in a very short time my muscles seemed to almost completely disappear. Not in that they got smaller, which they did also, but that my body turned to jello. Right now my body is like what it would be like if you poured pancake batter into a sausage casing. I can no longer flex a muscle and have muscle loss in places that I just don't think can be explained by lack of use, such as in my fingers and hands, which I still seem to use a lot. Also the short time period in which this happened, say a couple months, is no more than past periods in which I've been inactive and in those instances I had no noticeable muscle loss, much less to this extreme extent. I lost a good amount of weight quickly at the same time this was happening and believe it was all just muscle weight. Previously I was always toned and had strong, well-defined muscles.t

I want to talk to my doctor about this again, but wanted to see if anyone else had any insight into this beforehand. I feel certain inactivity is not the cause or at least not the primary cause. I know you can and do lose muscle in a short time after inactivity but this seems too extreme to be explained by that and also, as I said, previous periods of inactivity never yielded any noticeable muscle loss.

Thanks for any ideas.

 

[Sparrow]

This is a very frustrating thing to try to explain to many doctors. In my experience, they immediately assume that the problem is disuse.

I got super weak like that over a crazy short time span when I crashed out badly and became bed bound. Had nothing to do with disuse, as it happened WAY too quickly, and has gotten astronomically better over time rather than worse (despite my remaining in bed). I don't know if I lost any muscle mass, but they definitely weren't functioning. I was too weak to create enough pressure between my fingers to turn on a lamp, or open a water bottle.

I had my mitochondrial function tested via Dr. Myhill at that time, and came back with appropriately dismal ability to produce and recycle ATP for energy. I tend to think that was my problem. Just not any juice to fuel the muscles. That seems consistent with the other things I was noticing at that time as well (like having very definitive and obvious limits to my energy - even moreso than now. At that time the reserves were small enough that I could almost literally run out completely and no longer be able to move).

The other big factor for me at that time, I believe, was just how low my blood pressure was (and I suspect, my blood volume). Not enough blood to the muscles could stop them from working at full capacity too, I suppose. I would guess if it was anything that was responsible, it would have been one of those two.

It's a pretty awful place to be, and I'm sorry you're experiencing it. If it helps any, I did find that the more I rested, the faster I healed. The rate of recovery seems to keep increasing as I get well (I imagine since there's more energy left over to be put towards healing instead of just keeping my basic systems going to keep my alive). So the better I get, the faster I continue to improve.

I did some of what Dr. Myhill recommends for mitochondrial support and mineral replacement. I also did some targeted things to help increase my blood pressure (not sure if that's also an issue for you, but I increased water and salt intake like crazy, and take lots of licorice root - enough that my potassium needs to be monitored so it doesn't drop too low, but it's been VERY helpful). And I take lots of other things for other symptoms, that I suppose could have also had a beneficial effect on that. But for what it's worth, my muscle strength is much more normal now. The first few months were still pretty brutal, but it did get better eventually. Seems like a hazy nightmare now.

Best wishes to you. Not sure if there's anything the doctor can do to help, but I wish you well with it either way. In general, I would say that anything you can do to temporarily take some of the load off your body's energy supplies helps. When I was THAT bad, it felt like I truly didn't even have enough to keep all of my systems running properly at once, so it's almost like my body would rotate through some of them and I'd end up with awful problems that varied from week to week as my body diverted what little energy there was from place to place. Take as good care of yourself as you can right now.

As a note on the topic of muscle loss, if you're very severe, I would suggest getting help with some range of motion exercises if you have someone willing (move your arms and legs in each direction so the joints don't develop issues), but I would say don't worry about doing them yourself yet if it's a strain to even move. When you do have energy to move, start with the knees and shoulders, as they're the ones that develop problems first because those two joints rely on the muscles to keep them held together (and the problems themselves can be extremely painful/inconvenient). Reaching across your chest with each arm for the shoulders, and for the knees, starting with them bent a little (like resting over a pillow) and raising the lower leg up (or pushing the knee down) so the leg is straight (if that makes any sense). I wish I'd had somebody to tell me that rather than just generally pushing me to "exercise more" or do a full set of range of motion exercises when that was not AT ALL appropriate advice. Start with what's most critical, but ONLY once you can handle it.

 

[Annesse]

Hi Ocean- This sounds like it could be cachexia. Tumor necrosis factor has been associated with muscle wasting.

http://www.mendeley.com/research/tumor-necrosis-factoralpha-muscle-wasting-cellular-perspective-1/

Tumor necrosis factor is dysregulated in CFS.

http://www.ncbi.nlm.nih.gov/pubmed/8148443

 

[Dufresne]

Digestion is certainly something you should look into for obvious reasons. The other thing I'll mention is that the conversion of glucose to glycogen is energy dependent; Dr Cheney talks about this. When your energy falls below a certain level you store very little glycogen. The result is limp, poorly defined muscles which makes one look as though they've lost a lot more muscle mass than they actually have, in a short period of time. However in this state you'll notice actual muscle loss does speed up. I'm pretty sure this is what's going on in my case. I've lost almost 20 lbs. of muscle since working as a personal trainer six years ago, most of it in the last eighteen months. It's remarkable how thorough an ego destroyer this disease is.

 

[Annesse]

I think this study ties everyone's thoughts together really well. Dufresne mentions digestion, glucose and glycogen. Sparrow mentions ATP and I mentioned tumor necosis factor. The study found that CFS patients were deficient in amino acids. Specifically proteinogenic animo acids (amino acids which are found in proteins). The conclusion states, "In particular, depletions in the excretion of branched chain amino acid were the most prominent alterations observed." Among the proteinogenic amino acids, there are three branched chain amino acids (BCAAs) They are leucine, isoleucine and valine.

The study states,"BCAAs have anabolic and anti-proteolytic effects on muscle protein metabolism and their depletion has been associated with an augmentation in muscle protein proteolysis and a decline in muscle protein levels."

It continues," Increases in the serum or plasma concentrations of cytokines thought to augment protein degradation, Il-1a and TNF-a(tumor necrosis factor) have also been reported."

Branched chain amino acids are are converted into acetyl-CoA or succinyl-CoA that enter in the citric acid cycle. The citric acid cycle is where ATP is produced. The citric acid cycle is a series of chemical reactions that occur within the matrix of the mitochondria.The main goal of the citric acid cycle is to produce energy. The citric acid cycle is essential for the oxidative metabolism of glucose.
Glucose hypometabolism is also discussed in the study. A lack of glucose would also lead to some of the more classic symptoms of CFS; brain fog and exercise intolerance.

Succinyl-CoA is also the first component in the heme biosynthetic pathway. A backup in this pathway would explain the sun sensitivity found in CFS. The heme molecule then moves on to form the nucleus for the Cytochrome P450 enzyme system. This is the body's detoxification system. So, this pathway would also fail and chemical sensitivity would result.

The study also has some other very telling findings. There were significant decreases in succinic acid and asparagine. B12 is responsible for the conversion of odd chain fatty acids into succinate. The study also found changes in red blood cells. (Also indicative of a lack of B12) In addition, vitamin B12 serves as a co-factor for methylamalonyl-CoA mutase which converts methylmalonyl-CoA to Succinyl-CoA.

Here is what the study states about asparagine. "The reduction in the urinary output of asaragine in CFS patients noted in this study may be consistent with impaired protein synthesis, since asparagine is an important amino acid in protein structures, required for forming glyopeptides."

Under my previous thread, "Lack of proteases and CFS" I demonstrated how a lack of proteases would lead to all of the symptoms of CFS. Proteases are pancreatic enzymes that digest dietary proteins and release amino acids and B12. So, I think Dufresne is right, it all starts with digestion.


Here is the study.

http://ebm.rsmjournals.com/content/232/8/1041.full

 

[Ocean]

I think this study ties everyone's thoughts together really well. Dufresne mentions digestion, glucose and glycogen. Sparrow mentions ATP and I mentioned tumor necosis factor. The study found that CFS patients were deficient in amino acids. Specifically proteinogenic animo acids (amino acids which are found in proteins). The conclusion states, "In particular, depletions in the excretion of branched chain amino acid were the most prominent alterations observed." Among the proteinogenic amino acids, there are three branched chain amino acids (BCAAs) They are leucine, isoleucine and valine.

The study states,"BCAAs have anabolic and anti-proteolytic effects on muscle protein metabolism and their depletion has been associated with an augmentation in muscle protein proteolysis and a decline in muscle protein levels."

It continues," Increases in the serum or plasma concentrations of cytokines thought to augment protein degradation, Il-1a and TNF-a(tumor necrosis factor) have also been reported."

Branched chain amino acids are are converted into acetyl-CoA or succinyl-CoA that enter in the citric acid cycle. The citric acid cycle is where ATP is produced. The citric acid cycle is a series of chemical reactions that occur within the matrix of the mitochondria.The main goal of the citric acid cycle is to produce energy. The citric acid cycle is essential for the oxidative metabolism of glucose.
Glucose hypometabolism is also discussed in the study. A lack of glucose would also lead to some of the more classic symptoms of CFS; brain fog and exercise intolerance.

Succinyl-CoA is also the first component in the heme biosynthetic pathway. A backup in this pathway would explain the sun sensitivity found in CFS. The heme molecule then moves on to form the nucleus for the Cytochrome P450 enzyme system. This is the body's detoxification system. So, this pathway would also fail and chemical sensitivity would result.

The study also has some other very telling findings. There were significant decreases in succinic acid and asparagine. B12 is responsible for the conversion of odd chain fatty acids into succinate. The study also found changes in red blood cells. (Also indicative of a lack of B12) In addition, vitamin B12 serves as a co-factor for methylamalonyl-CoA mutase which converts methylmalonyl-CoA to Succinyl-CoA.

Here is what the study states about asparagine. "The reduction in the urinary output of asaragine in CFS patients noted in this study may be consistent with impaired protein synthesis, since asparagine is an important amino acid in protein structures, required for forming glyopeptides."

Under my previous thread, "Lack of proteases and CFS" I demonstrated how a lack of proteases would lead to all of the symptoms of CFS. Proteases are pancreatic enzymes that digest dietary proteins and release amino acids and B12. So, I think Dufresne is right, it all starts with digestion.


Here is the study.

http://ebm.rsmjournals.com/content/232/8/1041.full

Thanks so much everyone. So would taking amino acids possibly help then, if indeed that is the cause in my case.

 

[Annesse]

Hi Ocean,

The best example I can give you on why it would not be a good idea to take amino acids is they are the components of dietary proteins and you have lost the ability to digest proteins. For instance, gluten is a protein. A celiac patient avoids gluten because their immune system would react to it. If they were to take the components of gluten in supplement form, they would also have an immune response. I have posted studies that show this is the case when autoimmune sufferers take amino acids in supplement form; they had an increase in their disease symptoms.

You need to heal your GI tract and restore the missing enzymes in your pancreas. In my opinion, this should be done through diet and herbs. Also, you need to identify the many things in your environment, medications, foods, and even supplements that can destroy these enzymes. I think a good book to get you started is Nourishing Traditions by Sally Fallon. I have a large segment in my book,also,on how to go about this.

 

[Ocean]

Hi Ocean,

The best example I can give you on why it would not be a good idea to take amino acids is they are the components of dietary proteins and you have lost the ability to digest proteins. For instance, gluten is a protein. A celiac patient avoids gluten because their immune system would react to it. If they were to take the components of gluten in supplement form, they would also have an immune response. I have posted studies that show this is the case when autoimmune sufferers take amino acids in supplement form; they had an increase in their disease symptoms.

You need to heal your GI tract and restore the missing enzymes in your pancreas. In my opinion, this should be done through diet and herbs. Also, you need to identify the many things in your environment, medications, foods, and even supplements that can destroy these enzymes. I think a good book to get you started is Nourishing Traditions by Sally Fallon. I have a large segment in my book,also,on how to go about this.

Thanks Annesse. I can't say for certain I've lost the ability to digest proteins, since in my view, I do not know that for a fact and no testing has been done to find that out or to look into causes of muscle loss, so I'm not comfortable with that being stated as a given fact but definitely consider it a possibility as it makes a lot of sense. And if that is what's going on, then maybe it explains increased protein cravings I've had off and on since getting sick. Unfortunately if that diet is the only solution, I hope that issue isn't my problem because I've long ago ruled out that diet as suitable for me. I know many adhere to and are proponents of its principles but for my needs personally I'm not a fan of Weston Price foundation principles or, for me, the type of diet that book recommends. I appreciate all the info and will discuss that study with my doctor along with the other suggestions here. If that is what's going on, I hope I might be able to find some way other than that diet to get those enzymes. Thanks so much for the replies and links. Much appreciated.

ETA: I started reading more on Cheney and his approach on gut issues. Thanks Annesse for pointing me in that direction.

 

[Valentijn]

I take cysteine (in the form of NAC), which is an amino acid and makes a noticeable difference in how I'm feeling, without any side effects.

But gluten and egg whites both started giving me an allergic reaction after I got sick.

 

[snowathlete]

This can be a very frustrating symptom, and i have something at least, like it, and find it difficult. As others have said, doctors tend to assume that its muscle wastage due to disuse, as do people in general. Its such an obvious concept and widely known about so everyone jumps to that conclusion.
But I think there is more going on than that. Muscle weakness in ME/CFS, if thats the right term to use, is much more than disuse. Its as if my muscles arent as dense, or dont turn on properly.

I have started to wonder if its a case of muscles (as well as other tissue) not getting replaced / repaired / maintained with ME/CFS - at least not to the degree of a healthy person.

 

[donnie1234]

Yes! I had/have the exact same thing. My doc also attributed it to "disuse" which wasnt the case. In fact, the more i used it, the more my muscles dwindled away. Id be doing weight training to try and alleviate the muscle pain and better my sleep, and it expedited my muscle loss. Im a lot better now, albeit, not completely better, but i only improved with supps and being more relaxed. I think its has something to do with cortisol/stress. B vitamins and high doses of vit c helped me. Make sure u get as much sleep as you can and reduce your energy output a little ( on stressful things) but maintain walks, exercise etc. Dr wilson on adrenals + drmyhill on general health are good references. good luck my friend