Early warning signs of brain injury fatigue: It's like a switch is flipped

All sounds very familiar.
I wish there were another word to encompass these symptoms. I note they use the term 'pathological fatigue'.........

 

I am convinced that the core of ME/CFS is some kind of dysfunction of the brain: this, the similarities with CCI, the neuroinflamation findings by dr. Younger, the brain autopsies finding enteroviruses, etc. etc.

 

Am posting this because it is interesting to see the number of different measures used to assess cognitive issues after strokes. AFAIK very few, if any are used in ME/CFS research or tested for as part of primary care.

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0221735

 

This is interesting. I can have occasional short term episodes where my coordination becomes like some-one with cerebral palsy. Or so it feels to me.

The most recent episode was when I went out for a restaurant meal. We went mid-week thinking it would be quieter for me (we were a party of 3 couples - all old, familiar & very dear friends). Anyway the place was echoey and noisier than anticipated. We ended up eating 3 courses instead of the usual 2, and I was having a great time..... until suddenly I wasn’t!

I had a few minutes of thinking - ‘Ah, whoops, this is getting wonky, I really “should” make tracks now, but hey I’m having fun, and maybe if I just shut-up for a while and chill I’ll be okay .... I’ll not make a fuss just yet’, to feeling - ‘OH SHIT! I’ve gone and done it now! I really can’t walk out unaided, and as for explaining things to the others as I leave, forget it!!!’

Luckily for me, my good man is quick to notice, and we exchange those understanding looks, and he initiates a smooth extraction procedure for me. He explains that he’ll be back in a minute. I grab his hand, and concentrating very hard force my wonky legs to work. I can’t judge gaps between the furniture easily, nor balance well and I get a kind of tunnel vision as I make my way out in stops and starts leaning heavily on his hand. He gets me to the car, and then leaves me in peace for 20 minutes. This is what I prefer. Usually I recover my ability to walk & talk within an hour, but I may be delicate for some time afterwards.

The interesting thing is this is entirely different to feeling tired. I don’t usually feel tired while this is happening. (I can have “tired” as a separate thing though, just like anyone else, but that is quite different).

So what happens during an episode like this? It comes on quite quickly, but is never instantaneous. I always “know” something is up for maybe 10 minutes or so in advance. I can avert the worst of it, if I quickly find somewhere quiet to rest, but only if I pay attention to the early signals and don’t try to ignore them.

It does feel like something flips physically - it’s usually when I’m in a noisy environment. (I’m not, and never have been a worrier, so this is in no way an emotional issue).

Perhaps we do need these sort of changes measured properly.
(Not that I’d want to set myself up for the experiment really!)

 

A thought experiment:

If normal healthy people were given a tablet to temporarily induce significant hypothyroidism (maybe suppress their TSH or something), would they then experience symptoms akin to ME? Or is the experience completely different? My wife developed hypothyroidism in parallel with ME, so not possible to distinguish what symptoms attributable to which.

 

It’s interesting but what ist there in head injury fatigue descriptions are the things that make ME different to chronic fatigue, even pathological persistent fatigue which I’m sure has heavy life impact. Obviously this was a fatigue focus piece but accompanying that , They werent reporting severe pain, significant immune symptoms or prolonged or detrimental PEM from what I saw. They do report feeling more pain temperature control and feeling sick which is of interest. So I think that its useful to look to other conditions possibly to understand the fatigue component which might apply across illness/injury - and nab the research findings and suggestions - but not useful to lump ME in as another fatigue state like this or cancer fatigue because ME has its own complex presentation, type of progression and severity potential. So MS has chronic fatigue but isn’t called chronic fatigue. If we do share the fatigue pathway, where do we get additional symptoms and worsening with exertion from?

 

My husband took a thyroid storm, producing so much thyroxine it burnt up all muscle and his eyes turned yellow as his liver became damaged. He was treated with radioactive iodine to destroy his thyroid so became hypothyroid overnight.

He is treated with thyroxine and the dose has been the same for years but he never experienced anything like ME. If anything, the excess thyroxine was more like ME as it flooded his system with adrenaline causing tremor and itching under the skin.

Using adrenaline or something like that feels like an explanation for why we can do more sometimes. Going out could be one of those times. It gives us the ability to do more but we crash further. I use it to visit my grandchildren despite the cost. Interestingly, coming home I feel as if I could do some cooking or do something interesting. I find myself making plans. Then the effect fades and back to real life!

 

Me too. It was only when thyroid replacement brought about no improvement that I was diagnosed with ME.

 

Exactly the same.

 

Byron Hyde said that brain damage was necessary for a diagnosis of ME as opposed to CFS.