Why would CFS symptoms continually worsen overtime ?

[Jo86]

It's been surprising to me, but I've rarely, if ever, read anyone mention their CFS got worse overtime. Their condition is usually a hindrance, but a steady one.

This question is too broad and general, but why would the body gradually deteriorate in a CFS context over 16-17 years, in a constant free fall, just one way: down ?
Possible routes:
- Chronic infection: some pathogenic bacteria is making the host waste away, and hasn't been eliminated, so continues to do damage, worsening the symptoms; but I've tried a bunch of antibiotic therapies and combinations, and tests don't show a major sign of infection. Perhaps a more advanced dysbiosis test from a private lab ?

- Mitochondrial damage increases with time, because of oxidative stress, because of pollutants/alcohol/tobacco ... but I quit cigarettes long ago, rarely drink, the only med I take it Ambien for sleep, eat a very low sugar/ average-low carb diet. Perhaps long term keto is a solution ? Also NAC or NADH+CoQ10 don't seem to help much judging by a month's consumption.

- Brain inflammation due to some practice, dietary habit... ?

- An undiagnosed, cryptic autoimmune condition ? My mom had a form of autoimmune. I tested positive on a few alpha-adrenergic labs years ago.

- Something respiratory. Something to do with either oxygenated blood not supplying enough oxygen to the brain, or maybe even some sort of mini obstruction in pulmonary pathways or, just, sth with oxygen and bloodflow that was never diagnosed or treated.

- an enzyme, somewhere, is blocked or has lost affinity with a co-factor which can no longer help. Metabolic issue. Not making food into energy, which overtime, becomes worse and worse.
Currently on B12 transdermal oils (about 3 months), tried the B1 megadose thing to no avail so far...

 

[Rufous McKinney]

cranial cervical instability worsening over time?

likely in my case, the entire neck problem, which somehow is also tied into this entire mess.

 

[linusbert]

its complicated, its like with car, at first its just a bit of oil lacking, and then the motor goes boom when metal parts block things downstream.

tried methylene blue?

i dont think isolated components can overcoome the defects in the body, it probably must be a combination of many things. when someone figures this ever out... if ever.

 

[Rufous McKinney]

This question is too broad and general, but why would the body gradually deteriorate in a CFS context over 16-17 years, in a constant free fall, just one way: down ?

but isn't that what time and living a life do, regardless? I was so much healthier when I was "overweight"..but likely that was merely, I was in my Forties.

Now I"m going to be Seventy

 

[Jo86]

tried methylene blue?

I have not. Who knows, maybe this produces an effect on me.
But it's a prescription drug it seems, would need to convince the doctor...

 

[Jo86]

but isn't that what time and living a life do, regardless?

deeeeeeeeefinitely not normal in my case, Rufous !

 

[linusbert]

I have not. Who knows, maybe this produces an effect on me.
But it's a prescription drug it seems, would need to convince to the doctor...

people use it for their fishes, you for sure can get this without prescription.

 

[hapl808]

It's been surprising to me, but I've rarely, if ever, read anyone mention their CFS got worse overtime. Their condition is usually a hindrance, but a steady one.

Wait, what?

Don't lots of people here have experiences where it was mild for years, then something knocked them into moderate, then severe, etc. I rarely see people jump a whole level of improving from moderate to mild, but the other reports seem pretty much the norm? Maybe I'm biased in what I remember.

I got sick in 1997 in SE Asia. Immediately experienced mild to verging on moderate (obviously the language sucks - total life disruption, but still dealt with it). Over the next ten years it was mostly mild-moderate, with occasional bad extended crashes and a few times feeling more mild for weeks or months.

Then it dropped into more moderate-severe. Mostly housebound, unable to do stuff. Then more the severe side of moderate - 100% housebound, bedbound usually once or twice a week, etc. Can still make and eat food, but just barely.

Overall, I'd say a pretty inexorable march of getting worse over 20+ years. Why? No idea.

I did get some methylene blue actually, but haven't tried it yet.

 

[GreenEdge]

Why would CFS symptoms continually worsen overtime ?

We loose fitness because we can't exercise enough.

 

[Azayliah]

My weight is morbidly obese, and activity level averages about 2 hours of FoF with no exercise. My diet is not considered healthy. My heart rate is elevated; usually 80-90 when laying down, 110-130 when sitting, and 120-140 when walking. I've been this way since at least before Covid hit.

So....... I went to Urgent Care a few weeks ago because I couldn't move my thumb. When the nurse took my blood pressure, she stared at that meter for like... ever. And then stated that I was at 123/73.



They diagnosed me with trigger finger. Now I'm on physical therapy for that and my chronically inflamed shoulder. They initially weren't happy when I said I need to do it sitting, but this week the physical therapist told me (with clear surprise) that my range of motion is good, and they needed to elevate the difficulty of my therapy because I'm too strong for the gentler stuff.



So I would have said my heart was contributing to my decline; now I'm just confused. But I guess stuff coming back normal even when there's something clearly wrong is just the same story for ME/CFS.

 

[linusbert]

My weight is morbidly obese, and activity level averages about 2 hours of FoF with no exercise. My diet is not considered healthy. My heart rate is elevated; usually 80-90 when laying down, 110-130 when sitting, and 120-140 when walking. I've been this way since at least before Covid hit.

So....... I went to Urgent Care a few weeks ago because I couldn't move my thumb. When the nurse took my blood pressure, she stared at that meter for like... ever. And then stated that I was at 123/73.



They diagnosed me with trigger finger. Now I'm on physical therapy for that and my chronically inflamed shoulder. They initially weren't happy when I said I need to do it sitting, but this week the physical therapist told me (with clear surprise) that my range of motion is good, and they needed to elevate the difficulty of my therapy because I'm too strong for the gentler stuff.



So I would have said my heart was contributing to my decline; now I'm just confused. But I guess stuff coming back normal even when there's something clearly wrong is just the same story for ME/CFS.

then stuff is coming back when the body runs amok, the reason usually is they are measuring the wrong parameters.
a marker for muscle damage is CK and for heart is CK-mb , usually doctors do not take those values. another marker is LDH which also has subtypes.
but even those values arent worth anything.
i have a unknown myopathy, and my CK values were modestly elevated , yet despite any medical protocol doctors just ignored and said the levels were elevated because i was doing too much exercise... while one sentence later tell me i need to do more exercise because i am doing too less.

 

[JES]

Most chronic diseases get worse as we age except for some childhood illnesses. Aging, metabolic changes, free radicals, inflammation etc. would contribute to that. I would say that getting worse is luckily a slow process for most of us. Obviously exercise, stress etc. could make someone rapidly go worse, but the steady-state worsening in my experience happens over a longer time.

There are also ME/CFS patients who go from mild to then moderate and severe, but I would say this is a minority. Most people decline to a certain extent, but I would not say it's likely you will go from mild to severe over a longer time. The patients who became severe that I know of got there already in the first years of their illness. The longer time you spend in either the mild or moderate state, the more likely you are going to stay there and not jump to a worse level I reckon.

 

[Azayliah]

a marker for muscle damage is CK and for heart is CK-mb , usually doctors do not take those values. another marker is LDH which also has subtypes.
but even those values arent worth anything.

My CK was in the low normal range early last year. The overall pattern of the tests mainly seems to point to inflammation and infection... high WBC Count, Platelet, Neutrophil, Lymphocyte; slightly low Carbon Dioxide and AST. Likely LDH was also high at the time, as it's also a marker of inflammation (I think), so I have to agree... probably aren't worth anything.

despite any medical protocol doctors just ignored and said the levels were elevated because i was doing too much exercise... while one sentence later tell me i need to do more exercise because i am doing too less.

Figures.

 

[Wishful]

The body is amazingly complicated, with all sorts of interacting sub-systems, which interact with other factors, such as diet, activities, etc. I'm more surprised by ME symptoms remaining completely stable over long periods. My ME certainly has changed over my 30+ years; not so much in general severity, though I've had better and worse periods, but I've had some symptoms disappear, and others rise up. I've also had responses to various foods or components change quite drastically. Age also plays a role, changing how all those sub-systems function and interact. Age is more likely to make symptoms worse, but it could also reduce some.

Are you sure that you're talking about body degradation, as in cells ceasing to function? Many of our symptoms can be due to neurological dysfunctions that we simply perceive as physical problems. If our ME prevents us from physical activity, we'll lose fitness, but that could be reversed if our ME was treated. Likewise, we might deteriorate a bit from bad diets that we are forced into, but again that can be reversed.

I still believe that for most of us, if we had a proper treatment for ME's core dysfunction, we could be back to full non-ME health quite quickly.

 

[linusbert]

The body is amazingly complicated, with all sorts of interacting sub-systems, which interact with other factors, such as diet, activities, etc. I'm more surprised by ME symptoms remaining completely stable over long periods. My ME certainly has changed over my 30+ years; not so much in general severity, though I've had better and worse periods, but I've had some symptoms disappear, and others rise up. I've also had responses to various foods or components change quite drastically. Age also plays a role, changing how all those sub-systems function and interact. Age is more likely to make symptoms worse, but it could also reduce some.

Are you sure that you're talking about body degradation, as in cells ceasing to function? Many of our symptoms can be due to neurological dysfunctions that we simply perceive as physical problems. If our ME prevents us from physical activity, we'll lose fitness, but that could be reversed if our ME was treated. Likewise, we might deteriorate a bit from bad diets that we are forced into, but again that can be reversed.

I still believe that for most of us, if we had a proper treatment for ME's core dysfunction, we could be back to full non-ME health quite quickly.

actually i see it the same way except the point about deconditioning.
our bodys become older, and all humans struggle with age... with 100 everyone has cfs.
so a decline over decades is normal.

but the neurological dysfunction, that the body makes us believe we need to regulate down like we got a real illness and the downregulate system isnt switching back to normal - i do not believe in this theory.
deconditioning means you must have less activity , if you maintain same activity but its still getting worse its something else.
for me it feels like a constant state of overtraining.

 

[Viala]

We age and the body gets weaker over time, we continue to overdo occasionally, unless someone is a master of pacing, if such person ever exists, there can be accompanying diseases that will strain the body further, all of it accumulates. This disease is stressful and can be painful which brings a psychological factor that causes real physical changes, things are different after years of being in this state, unless someone can live in a perfect environment that provides comfort and everything we need. Then there's the disease itself with multitude of factors that we still don't know about.

I think it depends on a person a lot, but I'd be more comfortable to say that we should be careful and never assume that this state is a given, we can get worse so it's best to be very gentle with ourselves, and of course we can also heal at some point.

 

[Wishful]

but the neurological dysfunction, that the body makes us believe we need to regulate down like we got a real illness

I don't mean that our minds are fooling us into sickness behaviour, although that is possible. I meant that some parts of our brains are dysfunctional in a way that we misinterpret signals that might be normal. Maybe the muscle sensors are sending "we're at 87% of normal", while certain brain cells pass on the signal of "those muscles are at only 32% of normal; time to rest!" Alternatively, our brains might thing they're sending a signal of "lift that 25 kg sack of flour", but the muscles are receiving "lift weakly". Without actually measuring the signals and the muscles' responses, we just don't know what the problem is.

My brain cells are presently telling me that I feel lousy and should stop trying to do physical activities (I was cutting wood). Bleh!

 

[BrightCandle]

I don't mean that our minds are fooling us into sickness behaviour, although that is possible. I meant that some parts of our brains are dysfunctional in a way that we misinterpret signals that might be normal. Maybe the muscle sensors are sending "we're at 87% of normal", while certain brain cells pass on the signal of "those muscles are at only 32% of normal; time to rest!" Alternatively, our brains might thing they're sending a signal of "lift that 25 kg sack of flour", but the muscles are receiving "lift weakly". Without actually measuring the signals and the muscles' responses, we just don't know what the problem is.

My brain cells are presently telling me that I feel lousy and should stop trying to do physical activities (I was cutting wood). Bleh!

If were just the brain we wouldn't expect the odd responses to the exercise we get. The metabolic profile of the body wouldn't fail to respond to the exertion, we wouldn't get this mass amount of lactate excreeted by the muscles post exertion. Too many of the metabolic effects are local responses and don't appear to have nerve system oversight.

 

[andyguitar]

- Something respiratory. Something to do with either oxygenated blood not supplying enough oxygen to the brain, or maybe even some sort of mini obstruction in pulmonary pathways or, just, sth with oxygen and bloodflow that was never diagnosed or treated.

I would put this at the top of the list.

 

[PhoenixDown]

There are plenty of ME patients who's symptoms progress naturally over time. Then there are those of us who experience Consequential Progression or Deteriorative Symptoms, meaning we deteriorate due to exercise or sensory overload. I'm 100% bed bound, have been for years now.