Stamina levels before ME/CFS?

I was wondering if people can think back to their pre illness levels of energy. Do you think you could have regularly worked 12 hour shifts? I know there's been discussion on sport pre illness but what about daily life stamina? Watching NHS program on BBC in the uk and the junior doctors who have to work in a busy hospital 12 hour shifts as routine for years, I don't think I could possibly have seen that as anything other than massive struggle or even feasible PRE illness when I was young. So are junior doctors super human, are some of us just weaker and is there correlation to this and ME/CFS?

 

My daughter played netball, trained and played competitive football ( SFA standard) and generally ran about.
She had also learned to surf and whilst our waves are not decent enough, would happily spend hours body boarding in summer.

As puberty kicked in she was probably slightly less active, and pre glandular fever was more tired , but this may be a consequence of prolonged fight or flight ( or in her case -" freeze") response.

So pretty active ...

 

I was pretty active too and would have classed myself as fit , active and healthy. Except as discussed on here, endurance sport - swimming & distance running - I couldn't do or struggled with and nor do I think I could have worked as a JD , extra long busy shifts. I could however have gone for a weeks camping and hiking so would seem fine. I'm talking about that extra level as I'm trying to tease out whether we actually had a subtle weakness in stamina pre illness when the narrative is usually virus strikes down the previously normal.

 

Yes. I used to get the train to a hotel on Sunday evening, then Monday-Friday I would be with my business students from 8:15 to 21:00 or later - in the classroom, mealtimes, breaks, I was always "on" as the teacher. 4-5 days a week, get the train home, all weekend in the office preparing for the next week. 120 nights a year in hotels doing that for 5 years. Water off a duck's back, fit as a fiddle. 5 years ago I was getting up at 05:00, driving 2 hours, teaching 4 hours, driving across town to teach another 2 hours, driving to the next town to teach from 18:00 - 20:00, then stop at a friend's house on the way home to play music. I used to wonder why people winced when I told them and asked me if I was exhausted. I wasn't in the slightest. I also found / made time to do lots of sport, play music etc etc. I could keep going for hours / days, and if I ever did get tired I bounced back very quickly.

 

Wow that's impressive. You were sick in later life? I'm not sure if I had ADHD/anxiety so maybe for me the idea of focussing all that time seems impossible. I got ill in my teens so it's hard to say exactly as I never did the normal work thing to know my exact limits. I used to struggle with early mornings too, to me a twelve hour shift regularly in a demanding environment would have seemed too much, it would have put me off that kind of work.

 

Worked 11 hour shifts 5 days a week, went to the gym 3 times a week, played three sports, travelled. Etc.


It’s been a bit of a drop off since then

 

I had huge amounts of energy. I worked full-time and made full active use of my 'leisure' time. In Cornwall I was an active member of a couple of societies, including being a rep of various kinds, I collected firewood from a plantation at weekends, then went to the pub.

As I got more desperate for a fulfilling job, I started trying out other jobs during my leave. Then I started studying with the Open University, which took care of my lunch 'breaks' and most other free time.

It was about a year after leaving my job due to distressing circumstances (disappearance of cat and immediate boss's response to a couple of days off) that I developed obvious ME.

But I continued to be pretty active even then, for about 20 years, within the limitations of ME. It was only during the last few years that I started slowing down, and just over a couple of years ago I lost my memory to some extent - not sure if it's coming back, but it seems to, very slowly.

 

The hotel stuff was in my early 30s. The 5-years ago stuff was in my late 40s, just before I got ill.

 

When I was in my teens I was fairly active, no real sports but regional champion at 100m, I could win the school cross country, so it wasn't just short distances, but rarely bothered. Moving on and most of my problems were caused by ASD, but the results of these did impact my physical activity.

After the virus which I now strongly suspect "caused" my M.E. I could do more or less anything I could do before, just slower, and for a limited period of time. I lost many jobs, one after the other, because after a few weeks of degrading performance I would get ill, and be unable to even ring them, let alone turn up. Most employers won't put up with that more than once or twice, no matter how good at the actual job you are.

It wasn't until I found a job where I could do things, mostly, as I was able, schedule and enforce my own rest etc. that I was able to hold down a job for any length of time. Even there I needed to take all the sick days I was allocated, and use holiday days, to recover. It was at times, a very physical job, but as I said above, almost all the time I could schedule in rest, even rest days.

At that point I didn't know what was wrong, I had no idea that I was "ill", TBH I didn't give it much thought beyond getting irritated by it, thinking it was an inherent defect in me. You see/hear about it all the time, people who are lazy, who have no drive etc. - maybe that's what it was, how would I know?

After I got made redundant from that job I was still reasonably physically active, at least compared with now. Cognitively things were not good, partially due to deterioration and partially due to the medication I had been put on, they suspected I was epileptic.

Move on a few years and we're at the banking energy stage, I can still do some basic things provided I "rest" before, often for several days, and "borrow" energy from the next several days. I even managed to have one consultancy job in that period, heavily medicated with rapidly decreasing productive time and increasing side effects. But I was "productive", I got the job done. Since the I haven't worked.

I did try a volunteer position, 3 hours a day for 2-3 days a week researching at a charity helpline, doing little else but sleeping the rest of the time. it nearly killed me and probably immediately presaged my period of several months being bed bound.

It was at this point, well, after I had some function back, so at least a few months later, that I realised something abnormal was going on, that it wasn't just me. I had no idea it could be M.E. as I had no idea what that was.

 

I played a lot of sports for years before becoming ill. None at a national level. Would have been one of those with the highest fitness levels.

For around a year before getting ill at age 16, I did feel quite tired by around 9pm. I got around 8 hours of sleep a night so I possibly wasn’t getting enough sleep for a growing teenager. Anyway I wish now I had paid more attention to that feeling (though I did cut back on sports a little and gave up the guitar a month before getting ill as I did feel tired).

 

Hard to say for me, as I was always pretty lazy.

I would walk to school/uni (four miles a day), and when the music was good I'd be happy to stay on the dancefloor longer than most, but 12 hour shifts don't sound appealing regardless of my health.

 

I worked like a madwoman, but tbh, there are a few times in my life where I would say I "almost" had ME.

Ages 8-9 I experienced a drop in energy with dizziness and focus issues. Ages 12-13, again. Age 12 I was so concerned at my easy fatiguability (no PEM, yet) that I went to my doctor and asked if I might have CFS "like my mom". I was hustled so fast out of the door that my head spun. Since there was no proof at that point that ME could have a genetic component, I think they assumed I was observing my mother's behavior and patterning my own after hers. He told me I ought to lose a little weight and I'd feel better. (Heaven's sakes, I was a) 12 years old and b) not overweight.) No further investigations.

That summer -- perhaps unrelated but probably not -- my mom put me and my older sisters on a diet for the first time. There's a picture of me looking probably the healthiest I will ever look from that summer: fit, tanned, happy, and very thin. Still very tired, if not tireder, but I couldn't deny that it was easier to run around 11-lbs lighter.

Over my teen years I began to realize that the only way I felt healthy was when I took exacting care of myself. I treated any symptoms that popped up with vitamins and herbs (from age 12 on or so). By my late teens/early twenties, I worked out religiously, I stopped eating junk food and fast food. I wondered why everyone didn't live the active, healthy lifestyle that I lived, and rolled my eyes when other young twenty-somethings said that they felt just fine after eating pizza and lounging around all day, thanks (I felt gross and awful). I figured they were fooling themselves.

Nope! They were normal 20-somethings. I wasn't.

Maybe I'm totally wrong, but I think a lot of us lived such exemplary lifestyles because it was the only way we could continue to feel okay. At least those of us that were slow onset.

Rapid onset is a different beast.

 

I didn't but could have worked 12 hour shifts. One of the most annoying statements I have come across recently in the old papers is:

Treatment therefore must take into account the need to break this vicious cycle of deconditioning by initiating a graded programme of exercise which by small increments slowly restores the patient to physical health. It may be difficult to fulfil the patients' expectations of what their level of fitness should be since patients have an exaggerated perception of their pre morbid level of fitness.

Treatment of chronic fatigue syndrome. SJ McBride DR McCluskey
British Medical Bulletin (1991) vol 47 no 4 pp 895-907 @900

I have seen this quoted by others. How do they know? I am convinced that just before I became ill I was very fit. It takes a very strange sort of intellect to feel able to make generalisations of this sort about people in a supposedly in a class which has not even been accurately defined.

 

We were all a happy, healthy family but none of us were particularly sporting. The extended family doesn't tend to watch or play much in the way of sports.

We did have a long walk each day to school and some of it was very hilly. Went out walking with friends after school as well. As I child I had ballet classes, other dance and amateur athletics.

My only difficulty as a child was swimming in chlorinated water which I hated and made me feel sick.

My stamina problems only started in my mid-teens. I noticed that for sports I did like as a teenager i.e. tennis i could start really well but simply could not keep it up. This may have been the start of POTS. Part way into a game I would start to feel dizzy, disorientated and miss shots. The POTS also started with a viral illness.

No problems with horse back riding which was one of the few things I could enjoy without this loss of stamina.

When I started uni there were no problems with a full day of study and then waitresses or other physically demanding jobs in the evening stamina wise. The POTS and fainting had started by then though and this got worse.

Then ME struck out of the blue with an acute viral onset totally unlike anything I had felt before

 

This is infuriating... and demonstrably incorrect, since I was part of athletics programs and could easily compare my level of fitness to that of others.

I kicked butt.

 

My pre-illness days were:

1:30 a day cycling,
8:00 a day minimum physical activity at work,
working 10 days of work in 9 days, so every tenth day could be spent away from work,
every Friday night out from 8pm till 4 am.

A reliable measure of activity could be examined by looking at what their working/schooling (i.e non-optional) week was like you absolute fools.

 

and I took part in activity tests at the Open University summer school that I went to - passed with flying colours (unless someone can point me to some detail/s that shows otherwise), despite the heat. Details here if anyone is interested: https://forums.phoenixrising.me/ind...-and-results-of-1995-step-exercise-test.1650/ (at end of article) Already had some ME symptoms though.

Very fit before, although not always good on prolonged activities. I used to win short races at school, was good at jumping, etc.

 

Prior to getting ill in my 40’s I was working 10-12 hr days with no breaks for years (I worked in food retail/manufacturing) coming home, going out etc

I never really did sports or understood the point of it really since it seems an unnecessarily unproductive waste of time (I realise I’m probably in the minority on that one) I’ve always felt kind of sick after sports but was able to do it ok when forced. I conclude I don’t make endorphins or they don’t register like other people, so I don’t get an exercise high.

The 5-10 years before getting ill I was doing up our house which was a wreck that needed everything doing to it ...so I would leave for work 7:30 am drive an hour, work until 8 pm with no break, drive the hour home, have a quick tea and then be up stepladders sanding drilling scraping etc until midnight, have a couple of glasses of wine go to bed. I did this for years no problem, slept fine felt refreshed in the morning had loads of energy. Weekends were more diy. One Sunday I had hardcore and pea gravel delivered to finish off the drive that my wife and I dug out by hand (13 skips worth). My wife had to be away for the weekend and I was left to hand shovel 8 tonnes of rock and stone on my own. I did this and hammered it down with one of those vibrating plate things in a couple of hours.

Nowadays I can carry 2 kg for around 3-5 mins now without getting PEM.

I work 8 hrs now desk bound with 2 trips to the loo (120 steps each) The journey time is 3 mins by car and I have breaks throughout. I have no spare energy for anything other than that and my exercise for the day is having a shower and the steps to and from my car to front door and car to desk at work.

Weekends are mainly feet up with maybe some light pottering around the garden (1 hr of non resting time per day). I don’t go out and my wife and son go out and do most weekend activities on their own.

I am older than I was then (I’m 50 now) but my illness progression although gradual over a year was a massive difference to where I was over that period.