Am having a rough week.... causing in my case:
- Mental exertion triggering (extreme fatigue)
- Symptomatic nervous system activation (fight/flight response in overdrive, anxiety)
- Unpredictable dysautonomia potentially activating antibodies attacking my healthy cells leading to (brain inflammation, neurological dizziness, nausea, heart palpitations) and the other wide range of debilitating symptoms I'm experiencing.
It's been a week of meetings, multiple telephone conversations with insurance company, new doctor and all that goes with that, and the icing: finding out there's a second credit card on my account that is not mine and hundreds of dollars charged on it to be dealt with.
Explaining over and over to agencies what I have. Them having a health assessment of 'pain' levels of each symptom.. 1 being least, 10 being worst. Me explaining what I have is rarely quantifiable in pain levels so that scale is useless in measuring what they need to know. That they need to use a debilitating chart 1-10 for me. They want measurements in days out of the last six months. I tell them it's closer to hours out of the day, varying from day to day, sometimes minute to minute. They're confused because that's not a table they use. I exasperated explaining again that's what they need for people with this.
I finally started telling them to compare this with people with TBI. Their symptoms are not necessarily painful. But they are disabling so use their chart. That made some headway with them.
It's been an exhausting and debilitating week. :smiley_crocodile:
I get off the phone and go straight back to bed with covers pulled over my head and my weight blanket on to get my nervous system to relax.
So I haven't been on the board much.
Later
That issue with the mystery credit card racking up extra charges is an extra source of stress you don't need now, Ever.
When it rains, it pours ... :headbang:
So dealing with the healthcare industrial complex is having a detrimental effect on your health, requiring you to further have to deal with them regarding the new issues, which then causes further detrimental health issues..
Yep, that sounds exactly like the system the healthcare industrial complex has setup and its working perfectly to maximize profits.
Quote from: majorhavoc on February 16, 2024, 08:30:12 AMThat issue with the mystery credit card racking up extra charges is an extra source of stress you don't need now, Ever.
When it rains, it pours ... :headbang:
(https://i.pinimg.com/originals/b0/df/06/b0df06c87cf74cd46d20775ec8e16d4a.jpg)
Quote from: MacWa77ace on February 16, 2024, 10:50:43 AMSo dealing with the healthcare industrial complex is having a detrimental effect on your health, requiring you to further have to deal with them regarding the new issues, which then causes further detrimental health issues..
Nailed it!
ROTFLMAO
Quote from: MacWa77ace on February 16, 2024, 10:50:43 AMSo dealing with the healthcare industrial complex is having a detrimental effect on your health, requiring you to further have to deal with them regarding the new issues, which then causes further detrimental health issues..
Yep, that sounds exactly like the system the healthcare industrial complex has setup and its working perfectly to maximize profits.
It's like a really weird and really annoying merry-go-round of suck.
Like a Wheel of Misfortune.
To put it in game show terms, it's like playing "Press Your Luck" and getting nothing but whammies.
Quote from: MacWa77ace on February 16, 2024, 10:50:43 AMSo dealing with the healthcare industrial complex is having a detrimental effect on your health, requiring you to further have to deal with them regarding the new issues, which then causes further detrimental health issues..
Yep, that sounds exactly like the system the healthcare industrial complex has setup and its working perfectly to maximize profits.
I end up self-treating and then I get fussed at by a doctor for self-treating next time I go in.
Do better so that I don't have to resort to trying crazy things to treat what y'all failed at!
Also, the healthcare industrial complex failed to solve my chronic bowel incontinence for over a decade until I got fed up and self-treated and guess who solved that problem on her own (by trying something from a 30 year old mouse study, but at least it was low-risk).
Interesting article:
https://www.yahoo.com/news/long-covid-destroy-ability-exercise-180906669.html (https://www.yahoo.com/news/long-covid-destroy-ability-exercise-180906669.html)
Quote from: Lambykins on February 18, 2024, 08:21:53 AMInteresting article:
https://www.yahoo.com/news/long-covid-destroy-ability-exercise-180906669.html (https://www.yahoo.com/news/long-covid-destroy-ability-exercise-180906669.html)
Hope you don't mind, I'm gonna bring some excerpts over from your link because I had a thought about this.
QuoteFri, February 16, 2024--Long COVID can destroy your ability to exercise or do simple tasks — now we may know why.
A new study, published in the journal Nature Communications (https://www.nature.com/articles/s41467-023-44432-3), suggests that some of these symptoms may persist or worsen as those with long COVID-19 experience biological changes in their bodies after working out — most notably involving their muscles.
"We're seeing clear changes in the muscles in these patients," Michèle van Vugt, professor of internal medicine at Amsterdam UMC, said in a statement. (https://www.eurekalert.org/news-releases/1030039)
Okay. Now
most of my own malaise is caused from PEM is
mental exertion.So.. (to quote the study cited in the above)
QuoteResearchers from Amsterdam UMC and Vrije Universiteit Amsterdam (VU) have discovered that the persistent fatigue in patients with long-COVID has a biological cause, namely mitochondria in muscle cells that produce less energy than in healthy patients. The results of the study were published today in Nature Communications
We do know the brain needs glucose energy, which is a notable reason when our brain is tired mid afternoon, or anytime we've not eaten and have been studying or mental working and a lot of people find themselves reaching for a soda or piece of candy for a pick-me-up.
And right now I'm
heavy into another brain PEM from working on my schedule so I'm not gonna research it yet... but reading your link and the link's link to the study I began to think... asked Google some questions, and put this scenario together:
- mitochondria in muscle cells that produce energy
- high energy requirements tissues such as the brain are highly dependent on mitochondria
- in the brain mitochondria performs cellular respiration which takes glucose and breaks it down, releasing free energy
- the brain needs a lot of energy from glucose
So might the possibility exist that the brain mitochondria is not working right in the brain during
brain exertion in a similar way it does for muscles even though the brain is not a muscle?
Because (so says Google) severe reduction of brain glucose leads quickly to impairment of cognitive and reflex function, autonomic failure, ...snip... loss of consciousness.
And all of those happen to 'me' when I'm heavy into brain PEM. And as for the loss of consciousness, I can literally be sitting in a chair only to find myself waking and not know when I went to sleep... or could it be conceivable for my scenario that I sort of lost consciousness?
Well, frack. Just pulling this post together I've gone into a full body teeth chattering shake too so I'm beginning another Crash again.
I'll proof read this later. Gotta go.
Interesting article about growing legislative support for a Long COVID "Moonshot" (https://www.nytimes.com/2024/02/18/opinion/long-covid-research-funding.html?unlocked_article_code=1.Wk0.HvGK.1epGdHoc-Hvr&smid=url-share).
Note: link touches on the current political climate in Congress and the difficulty in enacting legislation. Linking to this article as part of the larger discussion about the serious nature of this disease, not to discuss politics.
Quote from: majorhavoc on February 19, 2024, 09:37:04 AMInteresting article about growing legislative support for a Long COVID "Moonshot" (https://www.nytimes.com/2024/02/18/opinion/long-covid-research-funding.html?unlocked_article_code=1.Wk0.HvGK.1epGdHoc-Hvr&smid=url-share).
Note: link touches on the current political climate in Congress and the difficulty in enacting legislation. Linking to this article as part of the larger discussion about the serious nature of this disease, not to discuss politics.
Wow.
Whether it comes to fruition or not, whether it gets watered down in the end or not, whether oversight fails it or not... that's a huge and public first step in a really great direction, both for L.C. people
and working together for the populace.
😎