Aging in ME/CFS, do we look older?

[rosie26]

I look old and feel old when in a bad relapse which I think is due partly to the dehydrated feeling I get. But mostly I am told I look a lot younger than I am.

 

[JPV]

Hi lucy, anecdotally I have heard it said we look younger. Sometimes much younger.

Yeah, I've always looked younger.

Less sun exposure could be another reason for looking younger.

Yeah, makes a lot of sense. I'm pretty much a homebody.

 

[Research 1st]

The I used to look so young for my age Vs years later, darn I look too old for my age scenario is a common phenomena in ME.

At the start of the cycle of chronic disease, ME sufferers would initially look younger than the age matched peers for obvious reasons if they never go in the sun, don't work down a mine until 6pm, 6 days a week, or experience huge levels of stress. On that basis you may be pretty pleased how youthful you look.

However....

ME sufferers (severely affected) would eventually look older than their age matched peers for not so obvious reasons, and that is uncontrolled oxidative stress.

In my experience of having this condition as a kid, teen, then adult:

Meet an ME patient who is homebound for 5 years, and they'll likely look young. I was always amazed how young I looked in my 20's more like a teen. I had incredible skin, despite being ill. I put it down to avoiding sun, never smoking.

But then..... look in the mirror as a severe grade ME patient who is homebound for 20-30 years and you'll likely look like a long term smoker, even a drug user at times (dark circles/greenish tinge under eyes around face due to toxins), and looking 'infected' with blood shot eyes, dreadful skin, and wrinkles.

Why? Other than obvious reasons such as genetics:

At the end of the day, if you have a severe form of ME, and for a Long Time this chronic low grade inflammatory state (immune activation, cytokines, infections and eventual autoimmunity) is never treated.....then you will age excessively quickly compared to a 'healthy' person who doesn't smoke, keeps fit, avoids stress, and eats and sleeps well (emphasis on sleep) and who isn't undergoing all this free radical attack on your cellular DNA.

They way to 'prove' that long term, severe ME ages you badly, is other than seeing signs of premature ageing compared to your peers (wrinkled/loOse skin, grey/white hair etc) would be to:

Get a DEXA scan of your bones in your 30's and see if it's like a 70 yr old (Common in severe ME).
Get multiple blood assays for markers of oxidative stress. (Very high levels are common in severe ME).
Check your cognitive function for your age, and see if this is more like an elderly person (It will be).

Thus, if you're long term decade sick, untreated severe ME sufferer, then of course, you will be 'older' than you should be, much older and suffering from Osteoporosis, Arthritis, and 'Brain Fog' more akin to someone in their 60's, when you're 35+.

Conversely if you have moderate ME or CFS, then no, the effects won't be as pronounced and you'll probably still look pretty good for your age, considering you aren't well for a long time.

 

[Tired of being sick]

Yes we all look much younger and this is very deceiving, since I have seen many doctors and the first words out of their mouth was "you look healthy".......

This is one of the very reasons why they think it is all in our head...

For example:those of us with one form or another Dysautonomia have all the symptoms of COPD
but our lungs look super healthy..

Basically our disease in the most part is invisible..

So we have to convince those who can not see any physical evidence that we are severely disabled..

Now think about this for a while..

In their eyes we are no different than UFO/BIGFOOT believers..

Note:

I purposely may have over exaggerated this to drive where their POV comes from...


Dysautonomia/in my case POTS is not invisible by no means

However those who are not Cardiac Electrophysiologists refuse to look at this factual UFO/BIGFOOT
for the fact it challeges their own "BELIEF STRUCTURE"

Cognitive Dissonance,Avoidance, Denial, & Rationalization

is the very reason why people are easily controlled by Authoritative figures IMO.

Here is an example:

If there is a lot of built up psychological stake in a certain position or attitude and a piece of solid evidence comes in which conflicts with that position, it may be easier, psychologically, to dismiss the new information than alter the existing structure.
You can imagine how ingrained psychological structures can be when a human being is raised within a certain country, system, or reality. Growing up in the US, or any culture, for that matter, you will absorb an overwhelming number of messages about what is true, what is possible, and what is important.
Many of of these messages are absorbed subconsciously and become part of the basic structure of our reality. It becomes very difficult to question the fundamentals when opposing messages only come in small doses from the “fringe.”


Consider this two example:

• Believing that your friend is trustworthy (having built up that attitude over years of experience) is a cognition that would be dissonant with the sudden discovery of your friend stealing money from you. As a result, you might seek to dismiss or minimize the importance of this new information—maybe telling yourself it was a freak thing, a joke, or an accident, or that he was broke or desperate or on drugs. You might even try to forget that you saw it.

TruthMove - Cognitive Dissonance

 

[rosie26]

Get a DEXA scan of your bones in your 30's and see if it's like a 70 yr old (Common in severe ME).

This was interesting. I had bone density scans done 3 years running. I think it was the years 1996-8 when I volunteered myself as a control in a study at the hospital I working. My mild ME symptoms had already arrived around 1994 (I didn't know though it was ME and I obviously falsely believed I was healthy to offer myself for a study at the time).

The results of the bone density were very surprising to me - strange - I can still remember thinking about it a lot and being really concerned - my bone density should have been great, not the result that I actually got. I understand now it was obviously to do with ME. I think I still have those results and I might have another look at them.

 

[Dufresne]

Aging is most noticeable in the skin. Tom Cruise and Joan Rivers are great examples of this. I saw Cruise on The Daily Show a couple years ago and he looked as if he'd just stepped off the set of A few Good Men. He's at about 8% body fat and there's no way his face should look like that at his age. Comparing him now to how he looked in Vanilla Sky (2001): he looks ten years older fourteen years ago. Similarly all Joan Rivers' plastic surgery attempts only seemed to make her look older until she discovered the face fillers and then she dropped about 20 years. Sadly that may be what finally killed her as, apparently, she was in some sort of walk-in clinic having work done on her throat when she went into cardiac arrest. But that's probably how she wanted to go.

I expect these procedures are only going to get more affordable. Viagra has solved one of the worst aging-associated problems, and it's only a matter of time until they figure out hair cloning. So for those of us who feel cheated out of our best years, there's real hope we'll one day be able to deceive the world and have sex with much younger people.

 

[jimells]

It becomes very difficult to question the fundamentals when opposing messages only come in small doses from the “fringe.”

When I was young, I found that 50,000 body bags from Vietnam shouted a compelling message about the nature of the "fundamentals". That early awakening helped create the cynicism necessary to withstand the continuing neglect and abuse heaped on me as a nearly bedbound ME patient.

I remember when homebound patients were referred to as "invalids", with the accent on the first syllable. That word certainly underscores society's attitude towards us. Society considers anyone whose labor can not be profitably exploited to be "invalid", as in "not valid", except for folks who appear elderly enough to be retired, although even "retirees" should be working part time as a Walmart "greeter" until they are infirm enough for a nursing home.

I have no idea how I appear to others or what they think of me, as I have very little contact with humans. I frequently go a week at a time and never talk to or see another person. When I do go to the grocery, my only interaction is "Hello" to the cashier, and "no thanks" when they offer to load my groceries into the truck.

If I look older than my age, I don't think it would make much difference in how I am treated. I'm sixty, and I frequently see folks working in the grocery store who look pretty near old enough to be my parents. I'm quite sure they would resent that I'm on "Evil Welfare" while they are forced to stand on concrete all day just to pay the rent.

The way the social system is organized is really quite brilliant. With everybody resenting the way that they think everyone else is living, it's impossible to organize folks to fight our real adversaries.

 

[jimells]

there's real hope we'll one day be able to deceive the world and have sex with much younger people.

But why would we want to? Sure, the youngsters look nice and all that, until they open their mouths and start talking!

 

[Hell...Hath...No...Fury..]

Its a strange phenomenon this whole age appearance thing with ME. Almost all ME people i've met in the past look much younger than they are.

I'm pretty much back to front. After the first two years of being bedridden i weighed only 5 and a half stone through complete neglect from my parents. So when i ever did get out of the house after that, people thought my mystery illness was anorexia (which really pissed me off)

My face constantly looked grey, with a tinge of green sometimes. I would stumble up the road like a new born deer taking steps. Constantly asking my mam to wait for me (she was always 10-20 steps ahead of me and would leave me to stumble behind her trying to keep up)

Whenever people saw me and my mam together, they thought we were sisters. I was 20-22, she was mid to late forties. They never believed i was the daughter. Most people thought i was 40. It really hurt me at the time.

Then a few years later, i started taking Maximol and Revenol while still moderate to severe, for oxidative stress and it turned my life around in a few weeks. I was full of energy and literally glowing. My brain fog eradicated, i could see colours again (i had no idea that everything had been in greyscale for a few years until the colours came back) it was quite literally magic and i never stopped smiling. I still had the PEM but my envelope was much larger.

I went from looking 40 at age 25 to looking 16. This continued for a few years and i never aged. Then the government tried to ban maximol and revenol which went on for a couple of years. I was distraught at the thought of losing it as i could only go 3 days without it before i started decomposing again. On the third day, usually in the afternoon i would literally have the plug pulled, my eyes would glaze over, and my skin would start to look grey before people's eyes. By the end of the third day, i was a drained robot again.

Eventually maximol and revenol was saved, by removing ingredients (of which there were hundreds) and changing the formula. While they still worked to an extent, i literally felt my health move down a notch or two.

A few years later, the formula was changed again, i knew when it happened as my health showed it straight away.

My age appearance always changed in direct relation to these anti-oxidants.

I still look a lot younger, 37 but pass for late twenties, but i can see the aging and fine lines now and i'm on a downhill slide.

But for me, oxidative stress has definitely affected my age appearance. Either that or the improved energy that comes from correcting it. I just wish that old formula still existed

 

[Thomas]

I had this convo with @Dufresne not too long ago. Personally, I think ME or at least the type I have is pre-mature ageing of the immune system. We essentially become old people whether we look it or not. What happens to 80 year olds and above?
They get boney, fatigued, their skin gets elastic, they lose collagen and connective tissue, cognition declines, exercise is a no, they don't exert but if they did I'm sure they'd crash, dry hair, dry skin, weird long body hair and facial hair, brittle bones, and most importantly they get low blood pressure, and other dysautonomia issues. Oh ya and sensitivities to sound, light, crowds etc...and poor digestion. The list is endless.

 

[Chris from Tampa]

I was carded when I tried to buy champagne the Christmas I turned 50 (2013). When I asked the cashier if she was serious, the manager came over because he thought there would be trouble. I told her she had given me the best Christmas present ever because I could go home and tell my wife I had been carded at FIFTY. Then I asked her what time she got off. She thought that was creepy, until I explained that if she was going to ask for ID, I wanted to be off the roads before she drove home.

She wasn't amused.

This isn't really relevant, but I hope you'll be amused.

 

[Hell...Hath...No...Fury..]

I had this convo with @Dufresne not too long ago. Personally, I think ME or at least the type I have is pre-mature ageing of the immune system. We essentially become old people whether we look it or not. What happens to 80 year olds and above?
They get boney, fatigued, their skin gets elastic, they lose collagen and connective tissue, cognition declines, exercise is a no, they don't exert but if they did I'm sure they'd crash, dry hair, dry skin, weird long body hair and facial hair, brittle bones, and most importantly they get low blood pressure, and other dysautonomia issues. Oh ya and sensitivities to sound, light, crowds etc...and poor digestion. The list is endless.

Imagine walking into a docs in your 20's and saying 'I'd like to be tested for old age please.'

 

[jimells]

Constantly asking my mam to wait for me (she was always 10-20 steps ahead of me and would leave me to stumble behind her trying to keep up)

Uggh. That's so rude. How can people be so unthinking, so totally unaware of what is going on around them?

I had a similar experience with my own mother about three years ago. We were walking from one part of the hospital campus to another so I could get an X-ray. It was very demoralizing that I could not keep up with a 75 year old. I don't know why she was in a hurry (compared to me!) - the X-ray machine certainly wasn't going anywhere!

 

[Daffodil]

Aging is most noticeable in the skin. Tom Cruise and Joan Rivers are great examples of this. I saw Cruise on The Daily Show a couple years ago and he looked as if he'd just stepped off the set of A few Good Men. He's at about 8% body fat and there's no way his face should look like that at his age. Comparing him now to how he looked in Vanilla Sky (2001): he looks ten years older fourteen years ago. Similarly all Joan Rivers' plastic surgery attempts only seemed to make her look older until she discovered the face fillers and then she dropped about 20 years. Sadly that may be what finally killed her as, apparently, she was in some sort of walk-in clinic having work done on her throat when she went into cardiac arrest. But that's probably how she wanted to go.

I expect these procedures are only going to get more affordable. Viagra has solved one of the worst aging-associated problems, and it's only a matter of time until they figure out hair cloning. So for those of us who feel cheated out of our best years, there's real hope we'll one day be able to deceive the world and have sex with much younger people.

Joan Rivers died during an endoscopy, I believe, which should have been done in hospital due to her age