How old were you when you got sick

[Aerose91]

I feel like this must have been asked at some point but I can't find anything. I'm curious where the bell curve lies.

 

[*GG*]

25 to 34, been ill for over 16 years now!

GG

 

[Aerose91]

I'm surprised how many people got hit under 18, I feel so bad for you guys. Do you have parents who also suffer?

 

[CantThink]

10 in 1991.

My parents do not suffer from it.

 

[Aerose91]

@CantThink. Do you know what your trigger was?

 

[Judee]

Age 12-13 in '79 or '80. My parents were not affected. It started out with mono but looking back I remember some other health incidents that make me wonder if the mono wasn't just the last straw.

 

[GlassHouse]

I was 21 when I got encephalitis and then developed ME/CFS


I had POTS/ dysautonomia since I was 12 and EDS type III since birth. And I was almost always sick with multiple viral and bacterial infections since I was born. No one ever thought it was strange I was constantly sick, was just told I had a “weak constitution” like it was the 1800s.

 

[Aerose91]

I was 21 when I got encephalitis and then developed ME/CFS


I had POTS/ dysautonomia since I was 12 and EDS type III since birth. And I was almost always sick with multiple viral and bacterial infections since I was born. No one ever thought it was strange I was constantly sick, was just told I had a “weak constitution” like it was the 1800s.

I got M.E. from encephalitis as well, I don't know that I've met any others. Is your presentation mostly psych & neurological? I have little fatigue but mostly cognitive and psych stuff that gets effected with energy expenditure

 

[GlassHouse]

I got M.E. from encephalitis as well, I don't know that I've met any others. Is your presentation mostly psych & neurological? I have little fatigue but mostly cognitive and psych stuff that gets effected with energy expenditure

My reply got too long so I PM’d you so as to not derail this thread

 

[Insomniac]

Age 15 in 1992. No sick parents.
I have 2 nephews, one has juvenile diabetes and the other autism. Everyone else in the family is healthy.

Mum had radiotherapy as a child for a non cancerous growth. So when the idea of low dose radiation as a possible cause came out as a theory, it got me wondering. but who knows.

 

[Rufous McKinney]

I was ten when I got the first mono round....1963.

I wonder if I met an entirely different EBV ....compared to the ones other's met in different eras.

I was the constantly sick kid who got everything, and often had more than one thing at any one time.

 

[CantThink]

@CantThink. Do you know what your trigger was?

Thought to be glandular fever (EBV?). It was sudden onset.

 

[maybe some day]

I was 22 when I got hit back in 92'

 

[valentinelynx]

1993, age 31

 

[soulflower]

I thought 26 yo with a horrible lymes battle - but now after reading more information and using hindsight. I had bilateral walking pneumonia/ bronchitis almost nonstop for years around 17-19 the moment I went to college. Pulled off the class camp trip at age 10 for some illness the teachers saw but my mother had ignored. And when I talked to my mother about ME after diagnosis and if I had mono or anything as a kid, she said I had a flu that nearly killed me and my older brother when we were toddlers, but she had no idea what it was. She did take us to a hospital but then didn't like them so took us home. So now I have no idea when this started and IF it started as a toddler, I never had any reference to normal to know. I'm starting to believe this may be true. I don't know things like when I got EBV, just that I test positive for it all the time now - but I can say the worst was when my dad died ten years ago. That was when it all became a surreal nightmare and I hit a wall. But I was always in bed super early, loved naps, hyperventilated, high anxiety - as a kid I vomited bile as the first scent of stress and eve now have this issue, low grade OCD as a child and severe depression even as a child, would only eat a few items, beyond thin almost see through was the joke as even my father called me Casper, but highly intelligent so they just assumed that was "who I was". My mother has this "I don't believe in illness." attitude - including trying to ignore my fathers cancer. So I can't get straight answers.

36 yo when I hit the wall and decided this is not in my head as doctors had long told me, so not sure how to answer the survey. 36 when the realization - not the onset..... How does one know life is different for others when they can't function long enough to interact with others and they have been told it's just "you" for their entire life?

I also now believe my father had this - his cci was so bad he had the top few vertebra fused with a titanium rod placed in for stability. Along with many other traits.

Now my niece, who is 14 is showing signs of POTS, very much like myself. Hopefully it is just a passing phase of some kind - hopefully. Too early to tell I suppose.

 

[2Cor.12:19]

1986 - age 36 - Slammed suddenly with an Epstien Barr Virus infection (not Mono)

 

[lauluce]

2000 - age 13 - the only trigger I can think about, is psychological stress due to a terrible familiar issue, I must be honest. If there's any doubt that I indeed have ME/CFS, I tested positive on the 24hs CPET, tilt tablet test (pots), functional MRI (memory impairment), etc. I fullfill the CCC criteria.
I think it's reasonable for extreme emotional stress to cause ME/CFS, after all being in a constant "fight or flight" mode causes all sort of organic changes and it's very energy-consuming. Also, psychological stress decreases immune function, thus making you more prone to infections. What do you guys think?

 

[Rufous McKinney]

I think it's reasonable for extreme emotional stress to cause ME/CFS, after all,

It certainly can play a pivotal role....if we think about these herpes viruses for instance, they are widespread with most people testing postivie for, say Eppstein Barr. But did not end up here. Some percentage with a genetic predisposition...likely.

I got SO MUCH worse after- well what is the BIGGEST stressor one can imagine? I mean there are many. I got subjected to a MASSIVE catastrophe. Which came with MASSIVE emotional stress. And even when Your not sobbing, your not the person who will let this Catastrophe destroy you...well- who knows. Within 4 months of said massive catastrophe- ME worsened by orders of magnitude.

 

[lauluce]

It certainly can play a pivotal role....if we think about these herpes viruses for instance, they are widespread with most people testing postivie for, say Eppstein Barr. But did not end up here. Some percentage with a genetic predisposition...likely.

I got SO MUCH worse after- well what is the BIGGEST stressor one can imagine? I mean there are many. I got subjected to a MASSIVE catastrophe. Which came with MASSIVE emotional stress. And even when Your not sobbing, your not the person who will let this Catastrophe destroy you...well- who knows. Within 4 months of said massive catastrophe- ME worsened by orders of magnitude.

The way I see it, anything that can cause physical stress, even if it is extreme anxiety due to a life event, can cause or worsen a preexisting ME. For example, my ME worsened both times I acquired disc herniations, although I think this must be related to the massive inflammation that is produced at the site of disc herniations, as they're mostly an immflamatory disease, contrary to most people's an even doctor's beliefs. By the way, I think it's likely that constant, localized immflamation might well contribute to systemic inflammation, do you think this makes any sense?

 

[xebex]

Got sick in April 2010, aged 31, 2 days after a vaccination. I believe the vaccine was the trigger, but prior to that I had had 4 years of excessive sleep deprivation caused by noisy neighbours, two toxic work environments, a nasty breakup and I was training hard to be a competitive BMX racer. I was racing every other weekend, and training at the gym 3x per week. I suffered symptoms of rhabdo (but no dark urine so doc wasn't interested) extreme sleepiness, daily headaches, brain fog, a feeling like my head was falling off loss of all stamina - i had to quit racing, and i was just about able to work though it was hell. I didn't know if I had ME/CFS at this time but still kept getting dismissed by docs, i could possibly have had overtraining syndrome that later developed into ME. Over a period of 9 months i was able to gain my energy back but could never race again. I then lived at about 95% for 6 years i was able to work and exercise but my stamina was greatly reduced - i'd have to sleep all day after 2 hours skiing when all my friends would be in the bar living it up, but life was good, sad that i could no longer keep up with my friends, but good. Then again, suddenly, after a house reno 3 years ago, i dropped from mild to about 30% functional. Rhabdo like episodes disappeared as i was never able to use my muscles like i once was (and so far haven't dared try it!), but instead I'd have terrible neuro issues after minimal activity - not able to speak, not able to read, flu like symptoms, migraine, dizziness, POTS like episodes, exhaustion, weakness, lethargy, coma sleeps etc. I am doing much better now, (maybe up to 60%) and with careful pacing, diet and basically doing nothing outside basic living, I can feel fairly normal, not much of a life though! EFT has helped, as has sugar free gluten free diet, ritalin helps but i build tolerance too fast.

As far as i know i never got mono but i have tested positive for EBV and CMV as well as HSV2. Have not had any other herpes tests.