Stamina levels before ME/CFS?

I wouldn't work for 12 hours even if I was healthy, and even if it was my own company. 8 hours maximum. I don't know if I could do it, probably, but it wouldn't have been easy. Other than that I used to cycle regularly, I've cycled 60 kilometers a few times, and I've run 10 kilometers twice.

 

Since my friend isn't on S4ME, I will add his two cents:

Before ME, he did half-marathons and biked miles and miles most days. Reading through these comments it sure does seem as though we were more fit than the average person before onset.

As a side-note, he's one of the most well-recovered pwME I've ever met. He works full-time and hesitates to say he has ME, but when I press and ask if he would say he's 'recovered', he hesitates in the same way.

He still has an 'energy envelope' and experiences symptoms if he goes beyond it; it's just a much bigger envelope than it used to be. And if he eats the wrong sorts of foods, same. He can and does exercise -- very carefully.

May all of us get to be at that level!

 

@JaimeS can I ask if there was treatment involved in your friends improvements?

My 'energy window' was much larger earlier on in my illness, but the more I did the smaller my window became.

 

Also, sorry if you've said elsewhere, but how long has he been well/better, how long was he ill, how ill was he...?

 

He did as close to zero carbs as he could get. I do few carbs, and I did as close to zero as I could get too, at one point. I think he's still pretty militant about avoiding them, moreso than I am. Beyond that, I didn't hear anything specific.

He was sick for about 10+ years. I think he was moderate at onset, slow climb up -- much like me. That gives me hope, I'm only four years in, and I've also been getting (slowly, slowly, slowly) better. Had an awful crash at the start of this year that seems to have set me back about a year. Slow climb up again, now. He's been about the same level of wellness for about 2 or 3 years now, I think, but it was a slow climb up all along.

I think the reason he didn't mention specific treatments is that, like us, he probably gave it all a go at some point. But I'll ask if there was anything he did beyond radical diet changes that he really noticed was helpful.

 

As someone has already mentioned, this thread likely suffers from some serious selection bias, both because of who responds to the thread, but possibly because the ones who are sicker (I think they predominate support groups) may have had more active lifestyles before getting sick (for whatever reason).

So to bring about some balance I can tell you that I did not have high stamina, and couldn't have worked 12h shifts regularly, although I have worked in construction on that exact schedule for 3 months. The way I see it now, I was already mildly affected and suffered from constant sore throat, never feeling rested, occassional flu-like symptoms etc. so I wouldn't be able to sustain it long term.

I think I was never really quite right. I believe I had some orthostatic intolerance and fatigue even before the first hit, which happened when I was 15yo, so I've never had a good chance to test myself in the workforce, obviously. I was never into sports, because I would get tired quite easily and did not have enough stamina even as a child.

After the first hit, there was a very brief period (maybe two weeks) were I managed to get myself almost perfectly healthy again through cutting out wheat and dairy for 6-12months, but it didn't last. It was quite an eye opening experience to feel how different you are when your body is working as it's supposed to. I then went on a hike with friends and in about the last part of the trek it felt like someone pulled a rug from under my feet. It wasn't like a normal fatigue, everyone else was fine, and I was fine up to that point. Like someone turned the lights off. Never felt that feeling of being fine again.

 

Ditto, @Pechius -- but I think I used activity and as close to a perfect diet as I could come in order to ward it all off. It's not that I was naturally inclined to more activity, or naturally vigorous -- more that this was how I coped with the beginning stages of systems failure.

 

Yep. The funny thing is that even though I didn't enjoy sports too much, I always liked working on something, especially physically, even though I found it difficult and exhausting. E.g. doing ridiculous ammount of woodcutting at the summer house, etc, way beyond my capabilities. I don't know why, maybe because it would pump more blood to the brain and I would feel somewhat better, but whenever I would sit down I felt really tired (although not 'sleepy' tired) and didn't like that at all, so I would go do more work..

 

Even sick, I'm still that way. I don't go beyond my activity envelope, but if I sit and do nothing I feel gradually worse and worse. Might be a function of poor circulation and low blood volume -- moving around gently (if it's possible) is just getting more blood to limbs and brain, and helping clear out crap (?)

Subjectively, it feels like there's more to it, though.

 

I do get a boost of energy and less stiff/achy/sore when I do activity (walking) within my limits.

 

Walking or pottering below 80bpm is my preferred “activity” I seem to sleep better at the weekends when I can afford to be more physically active ..also ahem less constipated (sorry tmi). I nearly made a facetious comment about @JaimeS early comment about clearing out the crap so thought I would deposit it here instead.

 

"deposit" it... I see what u did there.

 

Exercised about 10 hours/week: running, aerobics, weightlifting, tennis, hiking, X-country skiing. And, lots of hard physical work around the homestead.

With some theories, we can't win: exercised too much, which helped cause ME, or didn't exercise enough which helped lead to ME.

I miss working physically hard, and exercising. Now, my muscle pain tells me to stop about 2 or 3 minutes into walking up stairs. As for vigorous exercise, forget it!

 

Walking up stairs is vigorous exercise, these days.

 

My past is very different from the stories others tell. As I've mentioned before I have never been diagnosed with ME, nor do I know myself whether I have it.

I've never had much energy. As a child I was one of the best sprinters in my year at school, but I couldn't do any distance running at all - and "distance" was more than 100m. I played hockey (on grass) but found it exhausting. I've never managed to swim more than about 50m - 100m before my energy gave out. And when I reached puberty what little energy I had got even lower. I have had severe insomnia since I was about 8 or 9 years old - it always took me hours to get to sleep, and I went through school getting no more than 3 or 4 hours sleep most nights. At school, university, and work I would have to drag myself out of bed every day. At weekends as a student and when I was working I could and would sleep for 18 hours at a stretch when circumstances allowed, always desperate to catch up on missing sleep.

I've had a lot of health problems throughout my life, and they all seem to have caught up with me in the last 10 or so years. I know what some of my health issues are, but some things that are wrong with me are undiagnosed and nobody is actively looking for an answer for these issues including me. I've given up hope they'll ever be identified and cured or treated.

 

Did your lack of sleep perhaps cause your inability to sustain activity? (I used to have difficulty getting to sleep, and have difficulty sustaining activity in races and swimming.)

 

I think my lack of sleep must have sapped my energy for all sorts of activities. I think another factor that is almost certainly relevant to my low energy is that I have hydrocephalus. It was discovered accidentally about 6 years ago after a CT scan for something unrelated to hydrocephalus and two separate neurologists have said there is evidence that it has existed since childhood or earlier. One of the effects has been that my pituitary doesn't look normal. And it is the effect on my pituitary that I suspect has had more effect than anything else.

 

I got ill with ME during college, which I started directly after high school, so not able to test how working might go.

However, I seem to have done a lot of stuff, of the things I did do. I went on very long hikes from a young age (9?). In the national forest or park, following a stream course usually.

I used to do school, and babysit, and volunteer for various things, and play casually at whatever sport was available to me at the time (I rarely had access to formal sports).

I did get a bit dizzy and see dark spots, after running a while. My friends thought this was weird so I believed it was unusual and I didn’t try to tell doctors.

I already had an uneasy relationship with doctors because I had stopped growing as a toddler. I remember them poking and fussing, and not figuring anything out. I started growing again (of course) but was always underweight (until I was an adult, then the underweight became a part-time thing). My parents made me eat all sorts of yukky health food.

I could do things like:

work all day setting up at a booksale, babysitting at the booksale or helping with the tables, then stay and help with cleanup (pretty sure that was 11-12 hours, but only 2 days in a row once a year, a bit different from a regular schedule);

do a full day of school and then cook dinner from scratch and clean up the kitchen (again, not every day, but in grades 11 and 12, I think I cooked or babysat most weekdays, then did my piano practice and volunteer work on weekends).

I still had time to read for fun and climb trees.

Like others, I did always need my sleep. I got up early, but I went to bed early, too. And when it was bedtime, didn’t much matter what was going on. I felt ill and generally went to bed.

 

Hydrocephalus is something I plan to look into

 

You would need an MRI scan. The hole in the centre of my brain was obvious on the scan even to a non-medic like me. The effects on my pituitary were identified by someone with the skill to do so, it wasn't obvious.