How common is muscle weakness in ME/CFS?

[ChookityPop]

My worst symptom is SEVERE muscle weakness or premature muscle fatigue.

Is muscle weakness and or premature muscle weakness common in ME/CFS?

Or is it common in SEVERE patients?


I am confused as muscle weakness/premature muscle weakness is by far my worst symptom and I have the impression that when I try to find similar patients like me on this forum or elsewhere I very rarely find them... I have severe myositis like full body weakness which seems to be progressive. Muscle biopsy shows I have moderate myopathic changes, positive for CN1a autoantibody which is something like 40-80% specific for inclusion body myositis but all MRIs, EMG, NCS etc is normal. I still fear I have IBM though but I will probably not get the diagnosis even though my muscle biopsy shows myopathy.

I have dysphagia which make me unable to swallow solid foods at times. Cant chew semi hard foods as my jaw muscles will strain... Cant have subtitles on the TV as reading them will severely strain my eyes.. The list goes on.

 

[Mary]

@ChookityPop - your symptoms sound very much like how I feel when my phosphorous gets low. Hypophosphatemia causes muscle weakness, and it affects the small muscles first - such as in the throat (pills will get stuck in my throat and take forever to go down - dysphagia) and eyes (I'll start seeing double, especially when reading at night). I also will get very physically tired and weak. All this clears up when I raise my phosphorous levels.

I had to start taking a phosphorous supplement several years ago when I started taking thiamine. The thiamine initially boosted my energy - it was great - which was quickly followed by severe fatigue. It took too long for me to figure out that I was experiencing a refeeding syndrome reaction but I finally did. Several glasses of kefir - high in phosphorous - saw my energy returning. And I've been able to take thiamine ever since, but I have to keep taking a phosphorous supplement as well . Otherwise all the weakness returns.

Actually just recently I went through a bout of several weeks where I had unexplained weakness and fatigue, apart from "normal" crashing and PEM. I didn't know if my functioning had just gone downhill or what the heck was going on, until I discovered that a new phosphorous supplement I was using was not adequate. I upped my dose and miraculously some energy started coming back. I also discovered I needed to re-start my adrenal glandular but that's a different story.

So this is something you might want to explore. I don't think my phosphorous levels were ever low on blood work. But I didn't go to the doctor when I got so exhausted after the thiamine - I just stopped the thiamine. I didn't know what was going on and assumed that my blood work would be normal as always. And it probably would have been I think.

People with ME/CFS can have low intracellular potassium - which will NOT show up on blood work - despite apparently normal blood levels. This thread explains why. And I'm guessing the same may be true of phosphorous.

I have to take so much stuff to function and if I let up, I go downhill pretty quickly. I believe we have trouble with absorbing and metabolizing nutrients. I have to take megadoses daily just to function. Any deficiency never gets remedied.

Also there's something called phosphate diabetes which may be rather prevalent in ME/CFS: https://pubmed.ncbi.nlm.nih.gov/9683977/ Several years ago I saw an endocrinologist because I wanted to ask him about this. I didn't get very far. ("ME/CFS isn't real" among other things) Some day I hope to find an open-minded doctor who might look into this. I'm just curious.

And this all may have nothing to do with you. I really don't know anything about myositis and myopathy - but it might be worth looking into.

 

[hapl808]

I have severe myositis like full body weakness which seems to be progressive.

Same - weakness, pain if I overdo it (like trying to stand without crutches), progressive worsening no matter what PT I do or don't do. Tested with numerous MRIs looking for myositis but didn't find it. Neurologists seemed useless. Guessing it's some demyelinating disorder, but just ran out of gas dealing with doctors for so many years who only made things worse. The ones who encouraged PT and had me go from limited to 100% housebound and unable to stand were the last straw.

@ChookityPop - your symptoms sound very much like how I feel when my phosphorous gets low. Hypophosphatemia causes muscle weakness, and it affects the small muscles first - such as in the throat (pills will get stuck in my throat and take forever to go down - dysphagia) and eyes (I'll start seeing double, especially when reading at night). I also will get very physically tired and weak. All this clears up when I raise my phosphorous levels.

Any particular phosphorus supplement you take? I don't have problems with swallowing, but my muscles are really bad - all of them. I always feel slightly better when I have a few sips of Mexican Coca Cola, but cheese or other things that likely have phosphorus don't really do the same?

 

[Mary]

Any particular phosphorus supplement you take? I don't have problems with swallowing, but my muscles are really bad - all of them. I always feel slightly better when I have a few sips of Mexican Coca Cola, but cheese or other things that likely have phosphorus don't really do the same?

Interesting - yeah, I believe most soft drinks are high in phosphorous, and I never drink soft drinks. Anyways, I've done well with this product: https://hargravesotc.com/products/s...e-100-packets-by-rugby?variant=39364807000147

I go by symptoms and muscle testing (I do my own) and it works.

This is also a good product, but it has calcium in it and I have to be careful with calcium - too much and it gives me insomnia: https://www.amazon.com/Research-Phosphozyme-Phosphorous-Electrolytes-Production/dp/B074XQLRT3

I recently found I wasn't taking enough of the phosphozyme and instead of increasing my dose, went back to the hargraves product which doesn't have calcium in it.

 

[Violeta]

I was thinking of you, Mary, when I saw this study about hypophosphatemia in COVID.

They don't seem to know which came first, the low phosphorus or the COVID.

"However, it needs to be more elucidated by further studies whether hypophosphatemia in severe COVID-19 is directly related to COVID-19 or is just a complication of severe illness."

I don't know if anyone will look at phosphorus levels in people who develop Long COVID or not, but I think that would be something worth researching.

Hypophosphatemia in Coronavirus Disease 2019 (COVID-19), Complications, and Considerations: A Systematic Review​

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9616661/

 

[Blazer95]

my muscles are progressivly becoming worse for long term energy supply like standing etc.

short term still works, like opening a bottle, swallowing normal food etc. thankfully.

i have ME since 2021 from a bacterial infection. progressivly worse but now stable on moderate level thanks to medication.

 

[Carl]

I get very weak muscles when I get Potassium deficient. It's terrible until I get some Potassium into me.

I don't think it is Phosphorus with me because I get so much Phosphorus from Nuts especially Red Peanuts. I need to be very careful with Phosphorus because it can promote circulatory disease for which I have a family history therefore I need to be careful.

 

[Manjushri]

My usage of Oxymetholone/Anadrol has stopped the trips to the bathroom being a great physical and mental torturous ordeal that I would dread, I can hold my head up for more than a few seconds before my neck muscles give out, I can lift things with one hand instead of two, my body no longer feels like it's covered in lead weight.

If you are in the UK it's legal to purchase anabolic steroids for personal use, I could not go back to the 'life' I had before. Naturally you have the weigh the benefits and the downsides and come to your own informed decision.

https://thinksteroids.com/steroid-profiles/anadrol/
https://insidebodybuilding.com/anadrol/

 

[Hip]

Is muscle weakness and or premature muscle weakness common in ME/CFS?

Muscle weakness is not an ME/CFS symptom as far as I am aware, but rapid muscle fatiguability is a required symptom in the Canadian consensus criteria.

Rapid muscle fatiguability means the muscles have poor stamina, so they rapidly become weak when you start exerting them.

 

[bradipa]

I was thinking of you, Mary, when I saw this study about hypophosphatemia in COVID.

They don't seem to know which came first, the low phosphorus or the COVID.

"However, it needs to be more elucidated by further studies whether hypophosphatemia in severe COVID-19 is directly related to COVID-19 or is just a complication of severe illness."

I don't know if anyone will look at phosphorus levels in people who develop Long COVID or not, but I think that would be something worth researching.

Hypophosphatemia in Coronavirus Disease 2019 (COVID-19), Complications, and Considerations: A Systematic Review​

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9616661/

Hi @Violeta, I find I need to watch my phosphorous intake, too (do so via food). And I found this article helpful for understanding a bit better what might be going on in my body. Thank you for posting it.

 

[Mary]

Hi @Violeta - very interesting article, thank you! I found this particularly interesting because my white blood cell count has been low for over 20 years:

They also suggested that phosphate levels might be correlated with absolute lymphocyte counts. Their results were in favor of the study by Yang et al., which indicated that combining serum phosphate levels with lymphocyte count could effectively help determine the prognosis of COVID-19. These findings might support the theory that hypophosphatemia could exacerbate the leukopenia in COVID-19 [27].

Has my phosphate been low for over 20 years? I don't think so, but - I do wonder if we can have low intracellular phosphorous levels despite normal blood work, just like we can with potassium.

I'd really like to know why persons with ME/CFS are so prone to refeeding syndrome - so many on this forum have had to start taking potassium when they started taking methylfolate or B12. This generally doesn't happen with "normal healthy" people. It really seems that ME/CFS causes nutritional deficiencies. I think it affects how we absorb and metabolize nutrients, poorly.

 

[Violeta]

Hi @Violeta - very interesting article, thank you! I found this particularly interesting because my white blood cell count has been low for over 20 years:



Has my phosphate been low for over 20 years? I don't think so, but - I do wonder if we can have low intracellular phosphorous levels despite normal blood work, just like we can with potassium.

I'd really like to know why persons with ME/CFS are so prone to refeeding syndrome - so many on this forum have had to start taking potassium when they started taking methylfolate or B12. This generally doesn't happen with "normal healthy" people. It really seems that ME/CFS causes nutritional deficiencies. I think it affects how we absorb and metabolize nutrients, poorly.

One study that I read about hypophosphatemia said that lactic acidosis can cause it. But I think it could be that the hypophosphatemia causes the lactic acidosis, and they just find them in the same blood work and get the cause/effect reversed. I don't think I used the right words to explain that, but I hope you know what I mean.

I guess I could look for how lactic acidosis could cause hypophosphatemia, because that for sure is one thing that comes up frequently with respect to ME/CFS.

If you look up both terms, you are more likely to find that hypophosphatemia causes lactic acidosis.

" Interestingly, hypophosphatemia is a potential cause of resistant lactic acidosis, which may not be as commonly identified or considered. "

" It was ultimately determined that his lactic acidosis was due to hypophosphatemia after ruling out other potential causes. Phosphate replacement therapy resulted in the normalization of his lactate."

I did find this, too.
"Long-term starvation, malnutrition, and anorexia can deplete the body's stores of phosphorous over time. Acute hypophosphatemia is especially common in hospital patients undergoing refeeding. Additional causes include chronic infections, Crohn's disease, or malignant tumors.

Gram-negative infections
Hypophosphatemia is associated with gram-negative infections, and serum inorganic phosphate levels below 2 mg/dl can indicate Gram negative sepsis.

 

[Tammy]

Muscle weakness has been an issue for me since Day 1.

 

[GreenEdge]

@ChookityPop, sounds like over-training syndrome (OTS).

30 years ago, when I got my CFS diagnosis I suggested OTS and my doctor said same thing. They're now considered separate illnesses, but my journey from highly trained athlete to tai chi instructor, makes me think; OTS lead me to CFS, and the continued reduction in exercise level lead me to ME (our brain needs BDNF created from exercise).

To cure an illness one must fix the root cause, since we know treating the symptoms cures nothing.

For me the root cause was OTS:

 

[Dysfunkion]

I don't get the muscle weakness normally but when I hit the point where I am getting it I'm cooked, it doesn't feel like it's coming from the muscles themselves though when it hits. It feels like my brain is not able to signal to them to move efficiently and it will come with intense brain fog/inability to focus, speak properly, process things visually properly, handle cognitive tasks involving any sort of information processing where I need to spontaneously make connections between information well ,ect-. Physically when I get there I'll largely be dealing with flu like feelings and the general inflamed brain feeling making feeling anything through it more muddy. A lot of people here seem to get the burning in their muscles, mine is all in my brain, literally feels like its "frying" and actually "burned out".

 

[Viala]

I don't think muscle weakness is a typical ME/CFS symptom. Muscles are affected, but it's more fatigue and inflammation than weakness, at least for people who are not bedbound and move around at least a bit. This fatigue can be constant, so it's not always easy to tell what is what.

When I did semi-fasting I developed weak muscles after a few days and it felt different than typical ME/CFS muscle fatigue. Both of these conditions can be confused when one is experiencing only one for a long time, you can have both though.

 

[Dysfunkion]

I don't think muscle weakness is a typical ME/CFS symptom. Muscles are affected, but it's more fatigue and inflammation than weakness, at least for people who are not bedbound and move around at least a bit. This fatigue can be constant, so it's not always easy to tell what is what.

When I did semi-fasting I developed weak muscles after a few days and it felt different than typical ME/CFS muscle fatigue. Both of these conditions can be confused when one is experiencing only one for a long time, you can have both though.

Yeah I have over fasted before and have gotten the "normal fatigue" before and it feels distinctly different than my usual fluctuations in the inflamed brain fatigue. In fact when I fast more I actually get more clear headed but physically I'm extremely exhausted and slower so I cant really use the boost. Real muscle weakness for me doesn't make the muscles feel like lead, ill have the mobility but everything will just be moving slower. The lead body part thing I have even been able to immediately trigger before from a supplement (forgot what off the top of my head) and it will also be triggered from enough cognitive exertion just as sharply when it hits whatever the specific mechanism is.

 

[Viala]

Yeah I have over fasted before and have gotten the "normal fatigue" before and it feels distinctly different than my usual fluctuations in the inflamed brain fatigue. In fact when I fast more I actually get more clear headed but physically I'm extremely exhausted and slower so I cant really use the boost. Real muscle weakness for me doesn't make the muscles feel like lead, ill have the mobility but everything will just be moving slower. The lead body part thing I have even been able to immediately trigger before from a supplement (forgot what off the top of my head) and it will also be triggered from enough cognitive exertion just as sharply when it hits whatever the specific mechanism is.

Same here, fasting brings me a few better days but it doesn't always work.

There seems to be a few different types of fatigue and pain, they're just hard to describe, compare and explain, there are no words for that things. Which is interesting, that some words are missing. Well, ME/CFS feels definitely off the charts as compared to regular ailments that is for sure.

 

[Wayne]

In fact when I fast more I actually get more clear headed but physically I'm extremely exhausted and slower so I cant really use the boost.

I read up extensively on fasting many years ago. The main proponents of fasting back in the 1970's & 80's were Paul Bragg and Paavo Airola. They both believed fasting had enormous healing potential, but disagreed on how best to do the fasts.

Paavo Airola believe that fasting with fresh organic vegetable and diluted fruit juices, in combination with daily enemas, was ideal. Paul Bragg did not believe in doing enemas, and said water only, or water with lemon juice should be the only thing consumed.

I initially sided with Paul Bragg, and underwent several multi-day fasts. There were a few "high" points of feeling more clear headed, but I never felt a boost in physical energy, and a sense of well being.

I finally "resigned myself" to give the "unnatural" (as Paul Bragg put it) way of doing daily enemas and also drinking fresh juices. It made an enormous difference. I seldom felt as "weighed down" as I did with the water only fasts. They were also for the most part relatively easy to do, because I felt MUCH better while doing them.

These days, I frequently do coffee enemas, and feel it is extremely helpful in keeping my body detoxified. With so many toxins in our environment, it's a constant struggle for our body to keep up. I've come to the point of believing it's dangerous to try to fast these days without doing accompanying detoxifying enemas.

That's my story!

 

[Dysfunkion]

Same here, fasting brings me a few better days but it doesn't always work.

There seems to be a few different types of fatigue and pain, they're just hard to describe, compare and explain, there are no words for that things. Which is interesting, that some words are missing. Well, ME/CFS feels definitely off the charts as compared to regular ailments that is for sure.

If you dig around enough you'll definitely find various subtypes of ME/CFS, i also wish I had more words to describe it besides that it feels like my brain is being rate limited because I've had brief windows before but I often can't tie them to anything specific I did. Some people only have physical PEM, some people are bed/housebound, some people have severe cognitive PEM with physical symptoms (my cluster), and there's no answers because often you'll find something one cluster TENDS to respond well to but you'll always have random people it makes worse or does nothing to. Another trend you'll often find someone will find something that finally works and then one day it just mysteriously stops allowing them to function well. Another interesting thing I see happen often is someone will find something that's working for them and then they'll try something else and then suddenly the previous thing is permanently not doing the same thing or not working at all anymore.