Anyone else: Main Symptom mental fatigue?

[chger]

Hi to all,

i was just wondering if some people here also experience more pure "CFS like" symptoms rather than "ME".
For me my 4 main symptoms are:
1. Severe mental Fatigue, which worsens gradually over the day. Normally when its afternoon or later i need to fight for staying conscious.
2. Brain Fog and problems with thinking, especially when fatigue is getting more severe over the day
3. Sleep Problems
4. Worsening of fatigue and PEM mainly after emotional or mental stress or hard cognitive work. Physical activity also causes PEM, but not in such extent

For me i feel like this is not "real ME", as i don't have Muscle weaknes, pain, flu like feeling, headaches or onset linked to a certain event.
My onset in 2011 was rather gradual over a timespan for at least 3 months, but i really can't specify more precise.

Anyone else with similar symptoms?

Thanks!

 

[ljimbo423]

Hi to all,

i was just wondering if some people here also experience more pure "CFS like" symptoms rather than "ME".
For me my 4 main symptoms are:
1. Severe mental Fatigue, which worsens gradually over the day. Normally when its afternoon or later i need to fight for staying conscious.
2. Brain Fog and problems with thinking, especially when fatigue is getting more severe over the day
3. Sleep Problems
4. Worsening of fatigue and PEM mainly after emotional or mental stress or hard cognitive work. Physical activity also causes PEM, but not in such extent

For me i feel like this is not "real ME", as i don't have Muscle weaknes, pain, flu like feeling, headaches or onset linked to a certain event.
My onset in 2011 was rather gradual over a timespan for at least 3 months, but i really can't specify more precise.

Anyone else with similar symptoms?

Thanks!

I have all the symptoms you mentioned and a few more. Although they are much milder than they use to be.

ME/CFS researcher Jarred Younger has found low grade brain inflammation in patients and believes this is the cause of symptoms. He thinks that depending on where in the brain the inflammation is, determines what symptoms a person has.

The main areas he has found inflammation in, is the areas of the brain that control the sickness response. Which causes brain fog, physical and or mental fatigue, malaise (just feeling miserable), flu-like symptoms, etc.

Because the brain is the control center of the body, he says that the brain inflammation, depending on where in the brain it's located, can cause any and all symptoms of ME/CFS.

 

[Wishful]

Yes, that's similar to my ME experience. I don't have muscle issues. I do get perceived muscle aches at times, but those seem to be neurological rather than physical.

My onset was abrupt, apparently triggered by a tetanus booster.

My PEM is triggered by both physical and cognitive exertion, but they differ in delay time and duration, so they seem to involve different mechanisms.

So, feel free to join the atypical ME club.


Not that there is a 'typical ME' club. We're all so different.

 

[Rufous McKinney]

Your four issues are my most intense issues.

But I also sort of ended my career on a mental and not physical note. I ceased being able to go out and do things because I had no energy...but kept going mentally. (now, mentally is compromised, also).

I seem to have little problem imagining that with daily bouts of lower brain stem inflammation, which I contend is occuring here...well if one day, one tooth is aching, and I should pull it out. A few days later: there is no pain there and its in another location...pull that one out, then. Fortunately, I resisted removing my own teeth.

So if that is tissue in my brain, its going to VARY as to where exactly its Swollen and Inflammed..and this could readily account for any number of complex differences in symptoms, in patients, in changing sets of symptoms...some area swells, pushes on some adjacent area and bothers it.

In Chinese Traditional Medicine, some of my symptoms are described as "wind" and some improved dietarily for me...so aches and pains and swellings- blow around....show up over here, drift off, appear in another location. Wind could be drifting about the lower brain stem as well. Shifting, wafting.

 

[JES]

Yes, I believe this is more common than reported. One of my early symptoms was that my brain felt overloaded with lots of new people or new information presented in one day. It eventually gets to a point when my brain simply "stops" accepting new information. So if I was for example listening to five presentations in a row, at some point my brain would simply stop processing the information even though I would obviously still understand the words that were being said.

One problem with ME/CFS that is partly or predominantly characterized by brain symptoms is that it easily gets lumped to a psychiatric condition (even easier than classic ME/CFS, which we already know is still to this day claimed psychiatric in some circles). The day we get technology and tools to better understand what is going on inside the brain and when objective abnormalties are found, I predict psychiatry is going to have a difficult time. Given the abnormalities that have been found in ME/CFS e.g. related to brain blood flow, inflammation in the brain, metabolic abnormalities, etc., it would actually be pretty strange if all this had no effect on cognition or mood.

 

[Rufous McKinney]

It eventually gets to a point when my brain simply "stops" accepting new information.

This happens to me quite often...it just: STOPS.

When I observed myself unable to locate the letter "R" on the keyboard, one night in the full thoes.....it was just so SHOCKING as we all know where the "R" key is located. Brain, exhausted, just STOPPED.

It feels so very mitochondrial.

 

[soxfan]

@chger - Your symptoms are mine exactly. I do have a bunch of others but the ones you listed are the debilitating ones. I can deal with the others but the mental fatigue I get is the worse.
Mine can be caused by social...shopping...noise... crowds...television...computer or just by my brain not shutting off.
I can do almost anything physically Day after day but if I do too many days of acute (what would be considered normal for people without CFS) mental exertion I crash and burn.

I am now being sent to a social worker therapist because the stupid psychiatrist said CFS is a psychological illness. I am only going in the hope he can give me the name of a doctor who understands this illness. He is gonna be shocked when he realizes I am not depressed....he is in for a rude awakening when I get into that office.

 

[chger]

@soxfan : yes for me the same!
Physical activity will give me Limited PEM but not in such an extend as cognitive work, Social activity or stress. Or even emotions...
And i realize the worsening of symptomps after such mental Things will happen directly afterwards or latest some hours later

 

[Jyoti]

I'd have to concur.... In my case, PEM will follow after far too much physical exertion. No question that I am limited in terms of what I can do with my body. I get all the typical PEM symptoms--I feel like I have the worst hangover of my life every time I exceed my envelope. But I find that it is the emotional/relational/intellectual that really slam me, that bring it on more readily than exercise . Engaging with other people in a focused way or being in a large group where there is just too much going on are the things that drop me like an ox. I have found that even prolonged solitary experiences of emotion--including, weirdly, joy--are more taxing for me than digging in my garden. As is a time of intense concentration on anything intellectual, like writing. Thanks @ljimbo423 for reminding us of Jarred Younger's thesis that it is the part of the brain inflamed that will determine the symptoms. This makes a huge amount of sense to me.

 

[soxfan]

@chger - Yes emotions or emotional stress will totally wipe me out. Even if it’s a good mental stress I will still have awful fatigue and PEM. Mine is usually immediately but someday linger into the following day. It’s always been this way for me...

 

[Rufous McKinney]

@chger - Yes emotions or emotional stress will totally wipe me out. Even if it’s a good mental stress I will still have awful fatigue and PEM. Mine is usually immediately but someday linger into the following day. It’s always been this way for me...

Recently, I obtained a turntable that now enables me to play some of my old records. It brings me some kind of incredible joy to place the needle on a particular cut, and out comes some song I love, still know every word, and haven't heard in decades.

But I"m only allowed two songs. I get really wiped out from the emotional experience of hearing the music.

And if I get generally down, which happens periodically with this stuff, well I can just get SO sad...and can't really let myself cry, even tho I want to.

I'm with you as I experience really intense fatigue from mental and emotional activity.

 

[ebethc]

In Chinese Traditional Medicine, some of my symptoms are described as "wind" and some improved dietarily for me...so aches and pains and swellings- blow around....show up over here, drift off, appear in another location. Wind could be drifting about the lower brain stem as well. Shifting, wafting.

what dietary changes did you make?

 

[ebethc]

I have all the symptoms you mentioned and a few more. Although they are much milder than they use to be.

ME/CFS researcher Jarred Younger has found low grade brain inflammation in patients and believes this is the cause of symptoms. He thinks that depending on where in the brain the inflammation is, determines what symptoms a person has.

The main areas he has found inflammation in, is the areas of the brain that control the sickness response. Which causes brain fog, physical and or mental fatigue, malaise (just feeling miserable), flu-like symptoms, etc.

Because the brain is the control center of the body, he says that the brain inflammation, depending on where in the brain it's located, can cause any and all symptoms of ME/CFS.

have you ever tried boswellia for brain inflammation? curcumin and LDN didn't work out for me... Quercetin works on/off ...

 

[richymcp]

Hi,
Yes my symptoms are the same as yours as well. I've never been too badly affected physically. For a long time I wasn't sure if what I had was the same condition as other sufferers. My big problem has always been my brain not working, I get mentally tired very easily and have all sorts of problems with it. I have managed to stay employed part-time through my illness (god knows how I've managed it) but often find myself staring at my VDU screen with no clue about what it is I'm supposed to be doing. I also have issues with word finding short term memory etc etc. One other thing I've had is terrible nausea, constantly feeling sick to stomach, really horrible when that happens (it sometimes lasts for months). No pain either.

 

[ljimbo423]

have you ever tried boswellia for brain inflammation? curcumin and LDN didn't work out for me... Quercetin works on/off ...

I have tied Boswellia for general inflammation but only at a low dose. I didn't notice much from it but that could have been from the dose being too low.

I haven't found anything that works as well as epa/dha from fish oil for brain inflammation. I started taking 4 grams of epa/dha from 8 grams of fish oil, 9 months ago. I have only had 1 flu-like flare in the last 9 months!

It seems to me the flu-like flares I get have to be caused by the sickness response in the brain and the epa/dha somehow lessens the microglial response to my immune system flares. Therefore it also reduces the number of flu-like flares I get too.

I'm now taking 5 grams a day of epa/dha from 10 grams of fish oil! I think for most of these herbs to work well for brain inflammation, very high doses will probably needed for most people.

For example, 3-5 grams of quercetin a day might be needed and maybe the same for curcumin, etc. I understand these are very high doses but they might be worth a try.

 

[Rufous McKinney]

what dietary changes did you make?

Well basically:: the Tibetan Wind diet was recommended: make bone brothes out of heavy beef or lamb bones. With marrow. Include the meat as well...add nutmeg, a shot of wine, molassas. Before bed.

then: its warm, oily foods.....cooked, with a focus on root vegetables and avoid bitter greens. I eat very little raw food and avoid salads. And my joints...and weird pains all got MUCH MUCH better.

oh: its also avoid wheat...which is. very convenient for Tibetans, their barley was not banned. I reduced wheat quite a bit but do eat some occassionally.

I also had to go to very low sugar...that helped the joints as well.

Some of the chinese herbs I take also reduce "wind".

 

[taniaaust1]

Rufous. Im finding your post on being told by a chinese dr you have excess wind energy as I once had a healing with a Tai Chi grandmaster who could feel energy and without telling him my issues, he scanned my body with his hands and told me I had excess wind energy and he then tried to fix this (unfortunely I felt no better after that healing though this grandmaster was very powerful to the point he could do some crazy things).

I wonder if we all in Chinese Medicine would be found to have "excess wind" energy.
...................

chger. I get all those brain symptoms badly though In my case I get lots of physical symptoms too.

I was only talking to my psychologist about my brain issues today. She thinks she may be able to help me train one of the kinds of memories people have (automatic memory) so it can help overcome the other type of memory which does not work well in ME/CFS

I'm very interested how she's going to do this as I thought there is no way my memory can be helped as I've tried so many things. (she specialises in helping dementa patients with their memory issues so who knows, maybe she does know something which may help)

 

[ebethc]

Well basically:: the Tibetan Wind diet was recommended: make bone brothes out of heavy beef or lamb bones. With marrow. Include the meat as well...add nutmeg, a shot of wine, molassas. Before bed.

then: its warm, oily foods.....cooked, with a focus on root vegetables and avoid bitter greens. I eat very little raw food and avoid salads. And my joints...and weird pains all got MUCH MUCH better.

oh: its also avoid wheat...which is. very convenient for Tibetans, their barley was not banned. I reduced wheat quite a bit but do eat some occassionally.

I also had to go to very low sugar...that helped the joints as well.

Some of the chinese herbs I take also reduce "wind".

what about dairy?

 

[Wishful]

My interpretation of eastern medicine is that they started with a nonsense basis--four humours and magical energy--and then twisted their observations and explanations to fit that model. They can look at the signs a patient shows, and through thousands of years of combined trial and error prescribe some herbs or other treatments that work fairly reliably, but the explanation for it, with magical energy and excess phlegm, is still nonsense. Western medicine has its own false assumptions too. Dropping the 'four humours' model did help open their minds to alternative theories.

 

[Rufous McKinney]

but the explanation for it, with magical energy and excess phlegm, is still nonsense.

Knowledge of how to use chinese herbs was developed over a very long period of time. If it didn't work, people would not seek it out, and it would have died out long ago.

I don't worry about whether the explanation makes scientific sense as its not based upon our version of science. In fact, I like it exactly because its NOT based upon our "scientific method" which so far- often fails us.

Qi energy is not magical in my experience. If magical means "not physical or rational".

And I just had the western trained physical therapist describe to me that "air" is coming out of my spinal vertebrae. Air, wind...semantics.