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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Direct Causes of Fatigue (in CFS)

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
Its very different from any form of sleepy, tired from being out late, over doing..its none of that.

Malaise overshadows the fatigue most of the time.

I agree with both of these things. For me, significant body wide aches and pains often come with the fatigue and malaise. The aches and pains will sometimes be worse than the fatigue.

The aches, pains and the malaise make me think it's the brain causing these symptoms.
 

sometexan84

Senior Member
Messages
1,229
The fascinating thing is the differences in symptoms. Which makes one wonder if what we are really dealing with is multiple different conditions that have all been lumped together in one big "chronically feel like shit" bucket. I wonder if we'd get more answers if things were subsetted such that there could be more focus. Studies could then be done on people grouped together with the same "sub-type" of ME/CFS. Or maybe this is already the case?

@Booble You are my new favorite person!

Thank You! See, this is exactly what I'm saying. I 1,000% believe this to be the case. My "chronically feel like shit" disorder might have a different set of causes, symptoms, and treatment options than your "chronically feel like shit" disorder. Which would make our cases less relatable than a paraplegic and a lower limb amputee.

Yes to everything you said, and I enjoyed the wording as well. I have actually come across a bunch of articles and studies that talk about sub-sets and sub-groups in this regard. I do think it's super important.

And it's this that has led me to create such a post as this.
 

Booble

Senior Member
Messages
1,397
@sometexan84 Thank you!

Perhaps the results of research studies might be more conclusive if they were looking at people with the same problem. I don't have muscle aches and pains at all. Does that mean I don't have ME/CFS? Who knows!
 

sometexan84

Senior Member
Messages
1,229
I'd rather have it go to finding/treating/curing the core dysfunction--which should treat/cure all the related symptoms--rather than have it go towards treating a bunch of individual symptoms that we don't all share, and leaving all of us with other remaining symptoms.

Yea, I mean, I agree w/ that. Pretty sure we all do. For me, this is not about isolating and then treating symptoms. It's about understanding what's going on.

It was pretty evident early on that doctors weren't going to help me. The more I understand, the more I'll be able to take control of the situation myself, and yea, cure the core dysfunction.

Personally, this is similar to when I got divorced, battled for custody of kids, and my expensive lawyers all but said "there's no way you'll get custody". Lawyers and doctors, am I right!?! :woot: So I did my thing, and solved the problem. And now she's dead.... no I'm kidding. BUT, I did win custody of my 2 amazing kids despite experts saying they couldn't help me.

And guess what, this CFS crap is definitely an easier challenge.
 

pattismith

Senior Member
Messages
3,931
One thing that people with cfs/me might share is brain hypoperfusion.

Different sets of symptoms may be explained by different sensory receptors carried by different small non myelinated nerve fiber to different organes.

For exemple one theory for muscle acid lactic build up feeling may be explained by hyperactivity/hypersensitivity of the ASICs receptors in the small non myelinated nerve fibers to the muscle.

Other possibility is autonomic muscle vasculature dysfunction (because of small fiber neuropathy) leading to muscle anoxia exactly the way it works in the skin of neuropathic patients.
In these patients autonomic skin vasculature dysfunction leads to poor blood perfusion in the skin and skin anoxia. One of the symptoms is hair follicule atrophy in the legs (no hair on the legs or in some parts of the legs).
 

stefanosstef

Senior Member
Messages
528
It is quite similar to the fatigue I used to get when I was down with the flu and had light fever and that fatigue includes the brain fog part.
 

xebex

Senior Member
Messages
840
If you're talking about muscular fatigue, this quote from wiki is important: "There are two main causes of muscle fatigue: the limitations of a nerve’s ability to generate a sustained signal (neural fatigue); and the reduced ability of the muscle fiber to contract (metabolic fatigue)."

Also: "The perception of mental fatigue is believed to be modulated by the brain's reticular activating system (RAS)." Thus there's real fatigue, and perceived fatigue, which might not be real fatigue.

I think toxins can cause fatigue too, but I'm too fatigued to look for good references. :sleep:

@Wishful is there a way I can test to see if my muscle fatigue is neural or metabolic? thanks
 

Booble

Senior Member
Messages
1,397
Hmmm....lack of sleep tired versus general fatigue.
That's a tough one for me because the two can definitely blend. I'd say the difference between me and "normal" people is that lack of sleep is debilitating for me whereas my friends with insomnia don't like it but can go about their business relatively unscathed. They seem more concerned with the laying awake all night and being bored than with the, holy f@# I can't function the next day situation.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
@Wishful is there a way I can test to see if my muscle fatigue is neural or metabolic?

I'm not sure. I assume there are tests for metabolic muscle fatigue. There might even be a way to check nerve signals at different levels of muscle exertion. Maybe someone else here knows of actual diagnostic tests for that.
 

xebex

Senior Member
Messages
840
thanks @Wishful, i tried mestinon, which helped the muscles in my back but it seemed to make my legs weak and wobbly as a rebound effect so ultimately it was an unpleasant and unhelpful experience, but if it helped those weak muscles somewhat would that give a clue?
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
Your mestinon response might be a clue, but I'm not sure how to interpret it properly. If the mestinon gave a really clear response for all your muscle function, that might be strong evidence of it being a neural effect. Since it helped some muscles but made others worse, I'm not sure what that means. Indirect effects of the drug might be involved, which makes it much harder to interpret.

I'm by no means a medical expert; just a PWME trying to understand what's going on in my own body.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
  1. Oxidative and nitrosative stress
  2. Adrenal insufficiency
  3. Hypothyroidism in tissues or systemically
  4. Deficiencies or imbalances of other hormones
  5. Depletion of or imbalances of nutrients
  6. Iron overload
  7. Inflammation
  8. Mast cell activation
  9. Allergies
  10. Infections
  11. A wide range of autoimmune conditions
  12. Immunodeficiency
  13. Heavy metal toxicity
  14. Mycotoxins
  15. Et cetera
 

xebex

Senior Member
Messages
840
Your mestinon response might be a clue,
I'm by no means a medical expert; just a PWME trying to understand what's going on in my own body.

thank you, i know you're not an expert, just good to have a different perspective, and you do know a lot :p
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
Ooooh, I had one idea of how to possibly test for physical muscle weakness: artificial activation signals. If, for example, you couldn't contract your biceps for one more repetition, applying an appropriate pulse of current would make the muscles contract if the problem was the signal from the brain, but the muscles wouldn't contract if they were completely out of ATP or whatever.

I'm not sure how you'd want to apply that, but there it is if you want to experiment. :)
 

xebex

Senior Member
Messages
840
Ooooh, I had one idea of how to possibly test for physical muscle weakness: artificial activation signals. If, for example, you couldn't contract your biceps for one more repetition, applying an appropriate pulse of current would make the muscles contract if the problem was the signal from the brain, but the muscles wouldn't contract if they were completely out of ATP or whatever.

I'm not sure how you'd want to apply that, but there it is if you want to experiment. :)

Intersting thanks very much! No idea how I’d apply it! Ok so in my daily life my back muscles get more and more tired and sore till the point that It seems to shut me down and I eventually fall into a coma sleep and then wake up feeling poisoned or flu like not sure why One will happen over the other then the following day the muscles will tire even quicker and I’ll crash even faster. My muscles feel like they aren’t working properly but they do still work I could keep going But My brain gives up before the muscles do even though the muscles are very sore. It like they trigger some kind of toxic build up that makes me fall asleep almost like narcolepsy, then I get PEM. I have been thinking all along that it’s not ATP because in General I don’t feel tired. I have the mental and physical energy but it’s the muscles in my back that cause all the problems. Then in the crash I’ll get POTs like symptoms as part of the PEM. Methylsalycate patches with camphor in help a lot, it’s like they get the circulation going properly. So to me this suggests neither neural or muscle fibre but rather blood vessel related like that latest blood vessel crunch article on simmaron... ? Any more ideas? Thanks