Fatigue May Be the Wrong Term

[CSMLSM]

I prefer to use ME, but if you expand that acronym you're likely to get blank stares from people, and then be forced to clarify with "Chronic Fatigue Syndrome".
Personally, I think "Neuroendocrine Immune dysfunction" seems a closer fit.

Exactly this!

 

[Iknovate]

@CSMLSM Right there with you. Everyone wants to dismiss my off the charts readings for past viruses (my one-time MD Naturopath said there was something seriously wrong with my immune system). I do believe I did not help the matter exacerbating continuous high levels of stress, all in the name of pursuing a career and having a family, without the skills to do so in a healthy way. I have been pursuing conversations about getting 'stuck' in the wash of chemicals from years of living in a state of flight or fight.

As for activity, while I hibernated for most of 2020, in 2021 when our Recreation Center opened again I was asked to reformat and take over the senior movement class. It has been a godsend for me. I never have a problem pulling myself together for class. The class is exploding. In January I expressed logistical concerns to the director if my class was to stay around the 15-16 range. I made some arrangements to better accommodate up to 20 people (hesitantly agreeing to use a microphone and putting myself in the center of the circle). Yesterday I had 22 people! Again, I expressed concerns as we were nearly out of wall space. Their feedback to me is amazing and 'heals' a lot of internal hurts (perspectives of lack of worth). I've also recently gotten certified in Tai Chi for Arthritis and Fall Prevention, which I will start teaching in May.

Low and slow mind-body movement is critical for us.
And finding ways to help others is critical for our well-being and worth.

@Long Haul Mono Love the term, but it gets us no closer to anyone with the skills to help. I did specifically have a great chiropractor tell me to find a neuroendocrinologist, but that wasn't successful. Any recommendations for such a resource would be great. I will add an action item to contact my former MD Naturopath to see if he has any recommendations for other colleagues from Bastyr University.

 

[Long Haul Mono]

@CSMLSM...it gets us no closer to anyone with the skills to help.

One thing I'd definitely recommend to others, in the theme of 'leaving no stone unturned' is to rule out fungus infection.

I mentioned this in other posts, and the aspergillus fungus infection, I am currently working to get rid of, is something most people (allegedly) can be exposed to daily but a healthy functional immune system can easily defend against... thus my thoughts on the name "Neuroendocrine immune disorder".

An immunologist I saw a number of years ago confirmed there are "no issues with my immune system" but was likely to have run generic tests, ie it's there, but how effective is it? Obviously not enough for what I'm going through now.

I cringe to think where I'd be now if it wasn't discovered (and now treated), ie I was down 1hr of activity before I'd become exhausted.

 

[Rufous McKinney]

Their feedback to me is amazing and 'heals' a lot of internal hurts (perspectives of lack of worth). I've also recently gotten certified in Tai Chi for Arthritis and Fall Prevention, which I will start teaching in May.

How wonderful, you can do all that! Congratulations you class is such a success. And how wonderful for basic self esteem.

I used to do alot of Tai chi. I was highly trained, but can't master it what with my spinal birth defects and now I"m much older the knees are a huge problem. So I modify it and am trying to fight back a bit more.

So good for you.

And why do our knees fail so badly? Whats with this? My ligaments are too weak from the ME collagen breakdown, so I can' t do the turns. ((so I cheat on turns)

 

[Iknovate]

My ligaments are too weak from the ME collagen breakdown,

Is there a known association?

 

[CSMLSM]

Is there a known association?

Here some anecdotal

My knees were really bad early on and with the ups and downs of my condition the knees have followed.
they are now quite good after about 20 months recovering at steady pace and alot faster since 9th Feb this year.

Daniel

 

[Rufous McKinney]

Is there a known association?

well, it seems the viruses somehow weaken our muscles and collagen and ligaments and connective tissue, or can.

I no longer have fingerprints and can't trigger the thumb print machine. I don't know what will happen in customs.

Should I ever be in customs, ever again.

 

[Iknovate]

@Rufous McKinney Very interesting and unexpected. I've not heard of this before so much appreciated.

 

[CSMLSM]

@CSMLSM Right there with you. Everyone wants to dismiss my off the charts readings for past viruses (my one-time MD Naturopath said there was something seriously wrong with my immune system). I do believe I did not help the matter exacerbating continuous high levels of stress, all in the name of pursuing a career and having a family, without the skills to do so in a healthy way. I have been pursuing conversations about getting 'stuck' in the wash of chemicals from years of living in a state of flight or fight.

Hi Iknovate my name is Daniel.

Fight or Flight is mediated by the HPA axis in the Brain, when this system recieves stressful stimuli down stream from the PVN.

The paraventricular nucleus of the hypothalamus (PVN) has emerged as one of the most important autonomic control centers in the brain, with neurons playing essential roles in controlling stress, metabolism, growth, reproduction, immune, and other more traditional autonomic functions (gastrointestinal, renal and cardiovascular).

Being stressed causes your body to produce Cortisol a stress hormone. The hormone is actual a viral stimulant that many viruses have receptors to detect this hormone when at high enough amounts causes these types of viruses out of there dormancy state and ultimately to viral replication and spread.

Pharmacological doses of cortisol can either enhance virus replication or reactivation of a latent virus, such as Epstein-Barr virus (EBV) in vitro. Lathey and Spector (1991) showed an enhancement of the replication of human cytomegalovirus (CMV) in hydrocortisone treated macrophages.

Daniel

 

[Iknovate]

@CSMLSM Thank you Daniel!
New relevant information to study and explore, already consistent with my experience, but deeper language to express thoughts with.

Feel free to spread new pearls.

 

[DomSaxum]

Ever shot hoops or chopped wood until it felt like you couldn’t lift your arms? Suddenly, you needed to, and without thinking, you did, but the action set back your recovery.

ME feels like that. But all over, and all the time.

 

[Artemisia]

Personally, I don't use the word fatigue when talking to doctors.

Instead I like to break it down into two separate symptoms which often occur together:

1. Paresis (muscle weakness)
2. Cognitive dysfunction (brain fog)

Doctors seem to grasp these concepts better than "fatigue"...

I told a rheumatologist I had muscle weakness. She gave me the standard muscle strength tests there in the exam room and I passed all of them. So she put in my chart that I have no muscle weakness and told me to just exercise more. Despite me trying to explain to her that the problem is that I can't sustain muscle exertion.

 

[DomSaxum]

When a doctor puts something in your medical file, it's just like a company putting something in your credit rating - you can never get it out, no matter HOW wrong it is!

 

[Artemisia]

When a doctor puts something in your medical file, it's just like a company putting something in your credit rating - you can never get it out, no matter HOW wrong it is!

Yep, I wasted a ton of spoons fighting the many damning things she put in my chart. Letters to the hospital board, etc. It went nowhere.

It all started with the receptionist bizarrely taking a dislike to me before the appt and the whole staff suddenly had it in for me. That was one of the last times I went to a medical facility, and I'm better off w/o wasting energy on those people who only ever hurt me. I went to dozens of doctors in multiple countries and regions in the US. Not a single one cared or helped me at all.

 

[Wishful]

I told a rheumatologist I had muscle weakness.

Wrong term, unless you knew that you were unable to lift what you used to be able to. Inability to lift it as frequently as before would be poor endurance. If someone with ME wanted to report that, they should do an exercise routine (preferably witnessed and documented) that shows that the expected improvement in endurance failed to occur, and that PEM resulted instead.

When I talked to a doctor about my symptoms, I avoided the terms "fatigue" or "tired". My ME didn't cause any physical limitations (strength or endurance), so that never came up. Yes, terminology is important. Doctors wanting an 'easy out' may take advantage of any misleading terminology.

 

[TexRob]

I've been ruminating a lot lately about the terms we use. I'm not advocating for changing anything, just to invite more thought about it.

We all have experienced some of the challenges with using the word fatigue. Everyone is tired and drained, especially parents. It's too easy to consider it something to 'get over'.

When I was in my 20s and 30s struggling, I could sleep for ever and wake up more tired than when I went to bed. Now I struggle to sleep for 6 hours.

More specifically I've also been paying more attention to the 'pain' aspect of our discussions. Please know I'm not talking about serious pain. Eventually unable to stand or walk from back pain, I know what that is. But I remember when my daughter first mentioned my labored breathing and I really didn't know how to describe it. It really didn't qualify for laborious pain but I had to use some term like 'hurt'.

Now that we have a much greater understanding of what's going on with the Mitochondria in an anerobic state, there's a term I focus on more: stamina.

Fortunately, the definition fits well: "the ability to sustain prolonged physical or mental effort"

We struggle with stamina endurance. It's not that we're tired, we can't perform because the energy isn't there. Tired is different. It's the result of spending energy. We never got the chance to start spending.

The pain mentioned earlier seems to be more of a constant strain, just to hold your body up or even for your muscles to hang from your frame.

I can't relate to approaches to minimize effort as I believe some strain can be helpful (particularly if outdoors with increased sunlight exposure, avoiding mid-day which is draining). However, I am becoming more sensitive to how far I go for how long and for long periods of rest and recuperation. The results show up in improved recovery scores on my Whoop.

Thoughts?

I know this post is ancient, but I think it's a great topic and I'm new, so. I think this is a problem for MANY of things that ail us. Some of them I find are easiest to describe when they come back to me. I didn't realize that burping was a thing I'd miss, until I never burped. I think another big one is temperature regulation. I don't know how to explain that feeling to people. Now that I am on a protocol that is helping, I'm sweating again. It's not like I didn't sweat while suffering from this, but it was different, and hard to explain. So many of these "normal" things are hard to describe, or even recognize when they go away.

 

[Emmarose47]

It's a great topic and one that I've been thinking about lately...
I'll come back later to add my experience ( rest time now....

Quote ' we struggle with Stamina endurance '
'We struggle with stamina endurance. It's not that we're tired, we can't perform because the energy isn't there. Tired is different. It's the result of spending energy. We never got the chance to start spending'.
Love the way this is put... It's spot on.
When I first saw the proposal for SEID - Systemic Exertion Intolerance Disease I was like yes! This is more like it!

I'd I've for cfs to be scrapped but I guess we've had to put up with it for so long it's stuck . On the plus side at least that longevity is serving for cross research with long COVID .... 🙏 for that.

Quote
The pain mentioned earlier seems to be more of a constant strain, just to hold your body up or even for your muscles to hang from your frame.

I can't relate to approaches to minimize effort as I believe some strain can be helpful (particularly if outdoors with increased sunlight exposure, avoiding mid-day which is draining). However, I am becoming more sensitive to how far I go for how long and for long periods of rest and recuperation. The results show up in improved recovery scores on my Whoop'

Ah yes the Strain... I liken it to the worse virus happening and the effect on the body... The weakness the no power.
Heavyness and muscle aching weakness.
The plug is pulled..

Yep for me and so many of us it's that fine line between straining to get something which is good and so needed eg outdoor air / sun or social time to surrendering to the collapse. I used to beat myself if I didn't get it perfect, I don't now I just go with what intuitively feels the better option. Sometimes saving my sanity is the forerunner .

I'm working on a relapse plan at the moment... The cycles, what thoughts and feelings happen. What can help and most importantly what I need to remember to help me mentally / emotionally



Thoughts?

 

[Wishful]

So many of these "normal" things are hard to describe, or even recognize when they go away.

Yes, sometimes when I do a few hours of heavy labour, I realize that "This is what healthy fatigue feels like!" and that it's different from ME's "fatigue-like symptom". It's hard to describe the difference, but the difference is noticeable when directly compared.

... also, the 'healthy fatigue' goes away after resting. ME's doesn't.

 

[Anchoress]

Yes, sometimes when I do a few hours of heavy labour, I realize that "This is what healthy fatigue feels like!" and that it's different from ME's "fatigue-like symptom". It's hard to describe the difference, but the difference is noticeable when directly compared.

... also, the 'healthy fatigue' goes away after resting. ME's doesn't.

I make the comparison with fatigue onset of the noise and old fashioned record player made when the plug was pulled out... A kind of .... high pitched electrical groan. Just... a total drain... Nothing there to draw on. Been bad today and given up even trying to recall ordinary things as my mind just blanks out.

 

[Wishful]

Nothing there to draw on.

I'm not convinced that this is due to a lack of ATP (energy source). While stopping the flow of electricity to the player would cause that sound, so could other mechanisms (siezed bearing, electrical component failure, intentional prank by other human). For ME, neurological malfunction could produce the same 'feeling of lack of energy' that lack of ATP would. Sedatives make you feel 'drained of energy', but they don't do that by blocking ATP availability.