Mental Fatigue CFS

[Fogbuster]

This thread is for sufferers whose main symptom is mental fatigue.

I want this thread to be a place where the forum foggies can relate and share ANY positive experiences. Whether it be big or small. Improvement is key!

My experience

Brain fog stops me from thinking, accessing my emotional intelligence and having normal spontaneous conversations. I'm not able to express my feelings very well and am also not able to access the library of information in my head and piece everything together.

For me it feels like constant head pressure, blankness, as if there's a jam in the neuron production line.


What has helped your brain fog?

What triggers your brain fog?

 

[Snowdrop]

I have experienced brain fog much as you describe.

I have had cognitive issues to a varying degree over a lifetime with increasing severity over time.

Stress and fatigue while being the obvious culprits are what trigger worse symptoms.

I have had small gains recently in coming back from the brink of cognitive decline.

One thing that seems to help me is that I increased my Vitamin D3 intake. I started with taking 3 at a time and then went up to 7. I am now back down to 3 as a maintenance dose but I have to say that even if I skip taking it the effect lasts and seemed to be that something started working from the 7 at a time dose. I bought a bottle of 200 tabs at 1000 IU or 25 mgs. The effects were small but significant and didn't take long to kick in.

What has also helped is I have recently gone gluten free. The effect was fairly quick as well. I am not celiac and if I do eat something with gluten in it I feel no ill effect ie from my gut ~ then I never had gut issues, it's one of the few body systems that still seems to work for me

I'm looking forward to hearing what else has helped other people as well.

hope you get some relief,
SD

 

[L'engle]

For me there are two elements. the brain fog itself which prevents the level of thinking, learning and memorizing that I was used to. The short periods of time when the fog lifts, the other problem comes in, which is the sick and exhausted feeling that occurs from very short windows of mental exertion. Head pain, tightness and dehydration are part of this for me. So they appear to be two issues in my case but I would be glad of improvement for either one. Even thinking about doing something mentally strenuous causes the beginnings of the exhaustion sequence.

Methyl b12 helps somewhat with the brain fog and the exertional component.

 

[Fogbuster]

For me diet is key and instrumental to regaining a sustainable fog free future.

I want all the foggies to take a read of this, more exposure is needed for this kind of information, it's pure gold.

http://chriskresser.com/the-healthy-skeptic-podcast-episode-9

By far the best description and insight into the gut/brain connection. Give it a read, may take others a few rereads, but I can guarantee their is alot of incredibly insightful and new information.

 

[heapsreal]

im researching more into trying to increase acetyl choline and dopamine as a way to increase energy and lower lethargy that many of us have.
cholinergics and racetams can help increase acetyl choline, i think dopamine can help decrease muscle pain, make us feel good and improve cognition, energy without being overstimulated which may be from too much noradrenaline?? I think continuous use of substances eventually stops working, maybe its something one needs to use on a as needs basis with regular breaks???
Hormones play a part and closely connected to neurotransmitters but at the moment i have all my hormones balanced and now locking more into as needed energy boosters??

cheers!!!

 

[meandthecat]

I agree with most of what's said, nutrition is the key to fighting this along with good supplements. I doubt that it is a cure but it has reduced the symptoms dramatically. Methyl B12 sublingual or patches helped me turn a corner along with D-ribose which seems particularly good for rain(sic) fog.

The biggest ptoblem that I find is reduced IQ and blind spots. I was smart once, I could think far and wide but after years of functioning on an instinctual level reclaiming my humanity is so hard. I lost my memory, not just short term, and how do you know what you have forgotten? It is returning but it is patchy and tricks you into thinking that you know, when you don't. So I get blind-sided by events that once I would have seen coming.

On the up side it is like being an experienced if rather slow child, most things are new, much is hard to learn but I'm not carrying the baggage I was lumbered with first time round.

 

[SOC]

While brain fog and/or mental fatigue are most definitely major symptoms of ME/CFS, I don't believe that those symptoms alone indicate ME/CFS. I'd be looking very hard for the explanation for your symptoms and not accept "CFS" or "CFS/ME" as a diagnosis. You could have something treatable. Wish that were true for all of us!

 

[Fogbuster]

The brain fog is inhibiting my ability to research, socialise, work or enjoy any form of stimulation eg tv program, book or talking to a friend on the phone, just no escapism. Which makes this illness 10x harder to deal with.

It's making me very frustrated, angry and demotivated. Is their any recommendations from anyone on whether their is anything you can take to improve cognition? Baring in mind my CFS Is mainly IBS based. The problem is, even if I did have something which improved my cognition, everytime I eat something, the benefits would be nullified by the hydrogen sulphide producing bacteria being fed!

Any help would be greatly appreciated.

 

[Fogbuster]

Gut inflammation in Chronic Fatigue by Dr Henry Butt:

Among aerobes, the D-lactic acid producingEnterococcus and Streptococcusspecies were strongly over-represented in CFS patients. These findings were recently confirmed 22]. Among anaerobic bacteria, Prevotellawas the most commonly overgrown bacteria. Moreover, it was shown that the higher the aerobic enterococcal count, the more severe the neurological and cognitive deficits including nervousness, memory loss, forgetfulness and confusion 46]. Consequently, high plasma LPS levels in CFS could result from an increased production of endotoxin upon changes in the gut microbiota 47]."

Thought this was very interesting.

 

[Aerose91]

My mental symptoms are by far, bar none the worst part of this disease for me. However "brain fog" doesn't even remotely touch what I'm going through. I recently had a SPECT scan because I am so bad and the scan showed a lot of hypo perfusion and toxicity. Cognition, memory problems and confusion are there but it goes far far beyond that. Anhedonia and apathy dont even begin to describe how little I can feel, and I am so dissociated I have never found anyone else with this condition as dissociated as I am. There is so much emptiness and I can feel so little that it's gotten to the long where I can't even feel how bad I am. Combined with worsening dissociation it's like I'm in a false reality. I have no connection to reality at all- no time- no presence- no memory- no feeling- no experiencing or "being" in the moment. Nothing. I don't even know what life is SUPPOSED to feel like because it's a concept too big for my brain to comprehend. I couldn't feel depressed or anxious even if I try, my brain is just vacant from being real and present. I am consistently flirting with both dementia and psychosis. I'm 29.

I can't blame mine on diet because for over 10 years, long before I ever got sick I've eaten perfectly; no histamine foods whatsoever, no dairy, gluten, soy, corn, sugar, caffeine, alchohol etc.. and always 50-70% vegetables. The list goes on. I even boil my own organic bone broth.

This disease for me started with encephalitis and since the onset it's been like the encephalitis never went away and has just gotten progressively worse with tons of new symptoms added on top of it. And of course, any overexertion makes my brain function decline rapidly to which I need recover from

I would absolutely love to hear a story of someone who has recovered their brain from this. Nothing helps my brain function. I've tried all the supplements, all the protocols, everything- nothing helps.

 

[SOC]

I would absolutely love to hear a story of someone who has recovered their brain from this. Nothing helps my brain function. I've tried all the supplements, all the protocols, everything- nothing helps.

My daughter recovered the vast majority of her cognitive function. Although she may have some relatively small deficits, she's plenty good enough cognitively to be doing well in graduate school in engineering. The treatment that made the biggest difference was 20 months of Valcyte. Florinef for low blood volume also helped, although to a lesser extent. Her cognitive function did not come back all at once. It has continued to improve in the couple of years since she finished Valcyte treatment and started Florinef, so there may be some healing happening as well.

I got a lot, but far from all, of my cognitive function back with Valcyte and Florinef also.

 

[Aerose91]

My daughter recovered the vast majority of her cognitive function. Although she may have some relatively small deficits, she's plenty good enough cognitively to be doing well in graduate school in engineering. The treatment that made the biggest difference was 20 months of Valcyte. Florinef for low blood volume also helped, although to a lesser extent. Her cognitive function did not come back all at once. It has continued to improve in the couple of years since she finished Valcyte treatment and started Florinef, so there may be some healing happening as well.

I got a lot, but far from all, of my cognitive function back with Valcyte and Florinef also.

SOC

That's a really hopeful statement, thank you for telling me. I'm hopng soon I will start to see some turn around. For yourself and your daughter were the mental symptoms the worst? I barely have any fatigue, really.

 

[Fogbuster]

@Snowdrop
@L'engle
@Aerose91
@SOC
@searcher
@heapsreal
@meandthecat

Hey forum foggies,

How many of you have shortness of breath, restricted breathing, chest tightness?
Horrible sensitivity to light, noise and extremely jumpy?

After finishing a health questionnaire, my specialist diagnosed me with "chronic hyperventilation syndrome".
Immediately I pooh poohed it as another farcical blanket diagnosis but then after seeing the queen bee physiotherapist for hyperventilation syndrome, she quickly changed my mind. I thought my restricted breathing was a symptom of my gut problems but I now believe it was a causative factor of my gut problems.

What is hyperventilation?: http://www.physiohypervent.org/index.php?m=0&i=3

My experience of doing the breathing exercises: After only 15 minutes of doing the exercises my fogginess has improved, I feel wonderfully calm, my mind is quiet and my mood is good and my range of unexplainable symptoms such as adrenal surges and heavy heart palpitations are near to non existent (I thought I had POTS). I can feel this mild sharp pain in my head as if something is being reactivated. As soon as I go back into my normal breathing pattern, the symptoms re-emerge.

Long term improvements: Less moody, much less jumpy and sensitive to sound and light and generally more balanced. This is after only a week and a half.

I have been trying to get rid of my dysbiosis and heal my gut and have only achieved extremely minor results over a long period of time. I naturally wondered why. When you hyperventilate your telling your body to get ready for something, so it puts your body into sympathetic state. So because I hyperventilate on a continuous basis my body is in fight or flight mode on a continuous basis. How can your body heal if its constantly been put back and forth into sympathetic state! So i've come to the conclusion that in order to gain any significant results on any diet my breathing pattern will have to be corrected first.
FYI I bought a book on "buteyko breathing" and hyperventilation about 6 months ago and even then was still not convinced it was causing me my issues. The bottom line which Im trying to stress to you is do not underestimate how much overbreathing can affect your health. If (which im sure many of you do) have a few unexplainable symptoms, try this breathing and see for yourself if they improve.


Questionaire to see if you have hyperventilation syndrome: http://www.buteykokent.co.uk/images/The Nijmegen Questionnaire.pdf

I'll keep you updated on my progress.
Any questions fire away!

Best wishes
Jamie

 

[SOC]

How many of you have shortness of breath, restricted breathing, chest tightness?
Horrible sensitivity to light, noise and extremely jumpy?

I don't have those symptoms (thank goodness).

Congratulations on finding a treatment that improves your fogginess, though! That's one of the most difficult symptoms to deal with, so it's good to hear of someone finding something that works for them.

 

[SickOfSickness]

I've tried all the supplements, all the protocols, everything- nothing helps.

Have you ever tried months of antibiotics, antivirals, antiretrovirals, IVIG, etc?

Methylation?

Have you been in a mold free environment, like sleeping outdoors for 2 nights, to see how much it helps?

Aggressive rest therapy where you don't try to do anything for weeks?

 

[SOC]

SOC

That's a really hopeful statement, thank you for telling me. I'm hopng soon I will start to see some turn around. For yourself and your daughter were the mental symptoms the worst? I barely have any fatigue, really.

@Aerose91
Sorry I missed this post earlier.

Hmmmm.... were the cognitive symptoms the worst? It's kinda hard to say. Certainly they were really bad and made life, especially working, extremely difficult. Flu-like symptoms and feeling like I had mono every day for years was pretty awful. OI that prevented me from being upright more than 2 or 3 hours a day or on my feet at all made having any kind of life nearly impossible. PEM that severely limits what I can do without bringing back all those other symptoms is limiting and exceedingly frustrating. So... I don't know if I can say what's the worst. It's all awful.

Still, the cognitive stuff was bad. Not being able to read or drive, or find words, or remember much was severely debilitating. That improved dramatically with Valcyte and a bit more with Florinef and verapamil for POTS.

 

[Snowdrop]

Hi fogbuster

Thanks for the link. I don't have the first list of symptoms but my husband does so I passed the info on.

As to the second half sensitivity to light etc oh yeah. When I was a kid I was afraid of balloons because I was always expecting them to pop and when they did I always freaked out.

 

[AndyPandy]

In the acute stage when I was bedridden, I had trouble talking with slow slurred speech. I couldn't remember the words for familiar things. My memory was very poor. I couldn't read and couldn't make sense of a single sentence. I couldn't understand simple concepts. I had physical difficulty holding a pen and writing and when I did I misspelled words and mixed letters around within words. Prior to becoming sick I was working full time as a litigation lawyer, so this was a dramatic decline. I also felt like my brain was foggy and I looked drugged. Pretty much all of this has improved over the past 12 months or so concurrent with some physical improvements. I am still not as sharp as I was and my memory is not as good, but the rest of the symptoms have definitely improved.

I can't point to any one thing that is responsible for this improvement in cognitive function which seems to have come with overall improvement. That said I am still mostly housebound and wheelchair dependent to go out. Improvement is relative!

One very recent change in the remaining cognitive symptoms is that my head is much clearer in the past few days and I feel much calmer and happier. I don't have that drugged look and fogginess that seemed to appear inexplicably. This coincides with cutting back on salicylates. I am also six weeks into an elimination diet for grains and fructose and three weeks into eliminating dairy, soy and other identified allergens. Although it is early days I would say it is the elimination of salicylates which is the key to my recent improvement. Hope it lasts!

Best wishes and encouragement to all of you.

 

[Fogbuster]

@AndyPandy

Very interesting Andy. Congratulations on improving your fogginess, keep up the good steady progress!

I also will be eating a low salicylate diet soon. I often think if someone is not getting very significant results on GAPS or Paleo it can often be because there unable to break down histamine or salicylate's. I've been tested for histamine intolerance, which came back negative, so it can only be salicylate's causing me problems.

Out of interest what made you decide to reduce your salicylate's?

How long did it take for you to notice a difference in fogginess when starting a low salicylate diet?

Best wishes
Jamie

 

[justy]

Hi Fogbuster - do you have any links for the breathing exercises? cant afford to buy a whole book right now and don't have the time to read it all, but would like to give the exercises a try - my score was 29, although I never breathe fast, mainly a slow shallow breather.