Stamina levels before ME/CFS?

[Pen2]

@Dechi, I know how hard it was for you raising kids alone, working, school....etc. I too did the same.

Did anyone else blame themselves? Ask why can so many people do this and I feel like I can't....I must be lazy. No self esteem....blame ourselves because we new nothing about ME.

 

[JaimeS]

Did anyone else blame themselves? Ask why can so many people do this and I feel like I can't....I must be lazy.

Whoooboy. Especially with slow onset cases, I feel like the likelihood is high. I remember thinking I had a serious problem with procrastination, and beat myself up about it often.

I'd think that I didn't have the energy/focus to do X or Y... better wait until I felt better to start... but you rarely feel better. That can feel like procrastination, like just not having the 'motivation'. I think the difference is very subtle and it's taken me 3+ years since moderate-ME onset before I could honestly tell the difference between 'don't feel like it right now' and 'headed for a crash'. I think a lot of the same neurological signals may be involved.

 

[ScottTriGuy]

Fwiw, I grew up on a farm, so lots and lots of physical labour...or as I called it: child slavery. Endurance was never a problem.

As an adult I got into triathlon (after a very successful career of partying) and that meant loads of swim, bike, run and weight training - and the triathlon culture was all about pushing limits and embracing pain as a world champ said:

You don’t play triathlon. You play soccer; it’s fun. You play baseball. Triathlon is work that can leave you crumpled in a heap, puking by the roadside. It’s the physical brutality of climbing Mount Everest without the great view from the top of the world. What kind of person keeps coming back for more of that?

Crawl if you have to get to the finish, as did Julie Moss, who inspired millions:

 

[ArtStu]

I did 12 hour shifts in a physical on your feet all day job before I got ill, I used to do 7 a week some weeks, walked to and from work too, no problem

 

[Dechi]

@Dechi, I know how hard it was for you raising kids alone, working, school....etc. I too did the same.

Did anyone else blame themselves? Ask why can so many people do this and I feel like I can't....I must be lazy. No self esteem....blame ourselves because we new nothing about ME.

I admire you if you did it alone. We had split custody, so they were with me 1 week out of 2. And I was lucky enough that when I couldn’t function anymore, my kids were almost adults.

I can’t imagine how hard it must be with young children.

 

[Forbin]

I was in my early 20's and had a lot of stamina at the time of onset. I would ride my bike for an hour or two several times a week for exercise and would come home with my shirt soaked in sweat. I had to cut that back when I got a job that routinely required 12+ hour days. I did have some kind of OI as a teenager. My vision would frequently black/grey out for a few moments upon standing. It was hard to predict when this would happen, but seemed less likely for a while after a meal. Maybe it was a blood volume thing and drinking fluids provided short-term protection from it.

Although I could keep up moderately intense exercise from prolonged periods, I would quickly wind up gasping for air in any kind of "race." At full throttle, I quickly developed what I've come to realize was probably "exercise-induced asthma/broncoconstriction." I have no idea if that could have factored into the later development of ME.

 

[TiredSam]

Crawl if you have to get to the finish, as did Julie Moss, who inspired millions

That video has just inspired me to stay on my sofa.

 

[Wonko]

I did have some kind of OI as a teenager. My vision would frequently black/grey out for a few moments upon standing.

That's an OI symptom? As it used to happen to me when I was more active/more upright - I was never able to get anyone to believe me that it happened.

 

[Mij]

Before M.E I had excessive energy and made other people tired.

 

[Sean]

Clearly no problem with stamina before getting sick.

Should say that despite leading an active life pre-ME, I was always one of those who needs their sleep. I never did well without a good 8 hours every night even at my physical peak. Two late nights in a row and I felt it.

 

[Tia]

I did have some kind of OI as a teenager. My vision would frequently black/grey out for a few moments upon standing. It was hard to predict when this would happen, but seemed less likely for a while after a meal. .

I had this too, I remember going to the doctor's about it and I hardly ever went to the doctor's so it was severe enough that it felt significant, it didn't affect my life at all though.

I remember getting extremely tired as a teenager but then that's quite common I think so hard to know whether related or not. I rarely got ill and never had any of the other ME symptoms. I thought of myself as healthy but tired. I worked hard, was always busy and I still did exercise. I was never particularly good at sport - I thought it was just because I 'wasn't sporty' but in retrospect I think I may have had lower energy levels than some.

Onset was gradual for me from age about 20. (I think... although could have been earlier or even later, hard to tell). For me it was a few years of extreme tiredness but I didn't really class that as ill, just unbelievably tired. Then PEM started (I can only see that retrospectively, I didn't know that's what was happening at the time). Then after a year or two of that the other symptoms - flueyness, PEM etc. - came on.

It seems to me, just from observing, that the ones who get it almost over-night from a virus or something similar have often been very active and 'normal' before. Those who have gradual onset have maybe had ongoing smaller issues for a long time. Not sure if that's accurate or not?

 

[Pen2]

That video has just inspired me to stay on my sofa.

Me too!!!

 

[Pen2]

That's an OI symptom? As it used to happen to me when I was more active/more upright - I was never able to get anyone to believe me that it happened.

Surprise surprise....right?

 

[Pen2]

Wish me luck, I have to go to the store.... I'm out of water and bread! I need that stamina I don't have right now...

Talk soon.

 

[JaimeS]

That's an OI symptom? As it used to happen to me when I was more active/more upright - I was never able to get anyone to believe me that it happened.

Yeah, I remember describing that as a child and having people wave me off. OI is for sure a lifelong thing for me, though when I was a kid it was easier to deal with.

 

[Little Bluestem]

I worked 12+ hours/day for several months at 3 different jobs pre-ME. One was 5 days/week. Two were 6 days/week. The jobs were not as mentally challenging as medicine. No one's well-being or life was in danger if I made a mistake. (Well I was handling sometimes dangerous chemicals at one job, but the primary person at risk was me.)

I do not think medical students are super-human. I think the hours they work are stupid and dangerous. I would never want one to touch me.

 

[Forbin]

Also they used the subject's BMI index - patients who went on to have CFS at age 53 had a (statistically significant) lower BMI than those who did not go on to develop CFS at ages 36 and 43 (before they had CFS). The authors say this "this may provide some indirect but objective evidence of increased levels of activity at these ages, especially as this difference had resolved by the age of 53 years" (when the people with CFS were no longer more active).

The low BMI connection to CFS reminds me that I was very thin as a child, even though my height was normal. My older brother was never anywhere near as thin as I was. The pediatrician assured my mother than I would put on weight eventually, and I did do so during my teenage years. I was of an appropriate weight when I got ME/CFS a decade later. Still, I occasionally have wondered if being "skeletal" as a child was some kind of predisposition for my teenage "OI" symptoms and possibly for ME later. As I've said before, ME often seems like a crime with too many suspects.


ETA: Actually I posted the wrong quote above. I meant to post the prior quote from the same paragraph (see below), which suggests increased exercise levels and low BMI in childhood increased the likelihood of CFS. I'm wondering if lower BMI in childhood might be an indicator of some metabolic predisposition to CFS later.

Amongst other things, it found that "increased levels of exercise throughout childhood and early adult life and a lower body mass index were associated with an increased risk of later CFS."
https://pubpeer.com/publications/FF00A8557ACE2BE7D3A9D383189CD8

 

[MeSci]

The low BMI connection to CFS reminds me that I was very thin as a child, even though my height was normal. My older brother was never anywhere near as thin as I was. The pediatrician assured my mother than I would put on weight eventually, and I did do so during my teenage years. I was of an appropriate weight when I got ME/CFS a decade later. Still, I occasionally have wondered if being "skeletal" as a child was some kind of predisposition for my teenage "OI" symptoms and possibly for ME later. As I've said before, ME often seems like a crime with too many suspects.

I don't think I was thin as a child, and a lot of people here have problems with excess weight. I was overweight at one point during the illness, and lost it when I went low-GI (glycaemic index).

 

[NelliePledge]

The low BMI connection to CFS reminds me that I was very thin as a child, even though my height was normal. My older brother was never anywhere near as thin as I was. The pediatrician assured my mother than I would put on weight eventually, and I did do so during my teenage years. I was of an appropriate weight when I got ME/CFS a decade later. Still, I occasionally have wondered if being "skeletal" as a child was some kind of predisposition for my teenage "OI" symptoms and possibly for ME later. As I've said before, ME often seems like a crime with too many suspects.

obviously I see the issue with people with very severe ME and low BMI due to difficulty taking in nutrients
I dont fit with low BMI I am at the other end of the spectrum and there are a few of us on the thread about how to lose weight in similar boat, probably not as fat as me though
People I speak to elsewhere especially us middle aged women struggle with weight, and quite a bit of discussion about how amitryptiline makes people put weight on.
is this a distinguishing feature between those who have onset as teenagers and us oldies??

 

[Aurator]

since patients have an exaggerated perception of their pre morbid level of fitness.

What? All patients? I'd say almost none of us do. That's one of the core reasons our torment is as great as it is.

In my own case when I was well I competed in cycling time trials almost every week during the summer. After completing every race of 10, 25 miles etc. I was given a time and a position relative to other competitors. Contrary to the claim made by McBride and McCluskey I knew with incontestable exactitude how fit I was and how fit I was in relation to everyone else I was competing against. For the record I had a resting heart rate of 38 bpm, a maximum of 196, could sustain 170-180 bpm for around an hour without "blowing", and generally finished in the top quarter of the field, the field typically containing a sprinkling of top amateurs and even professional cyclists occasionally. To get even moderately good like this I had to do a hell of a lot of training besides the racing. Now, in my ill state, I consider myself lucky if I can trundle to the local park and back.

"Exaggerated perceptions" indeed. Rash claims like this by opinionated morons who've probably never been athletes themselves and certainly never had ME make my blood boil. If they're still around, what have McBride and McCluskey to say when faced with evidence like mine? "Sorry" would be a start.