Did you have any problem with aerobic exercise before becoming ill? Like childhood?

[L'engle]

I was outdoorsy and ok with walking and moderate exercise, even got very into biking for a time. As a child though I was always worse at athletics than everyone else. To an embarrassing degree. Slower, weaker, less coordinated. I've realized over time that my unusually flexible joints were always a hindrance (except in stretching). Also I was very small boned in the upper body and not predisposed to building muscle.

I was 'healthy' though and rarely sick as a child.

But I never learned to swim properly because it was simply too exhausting and I lacked a basic strength needed to propel myself through the water. Unless downwards. I was pretty good at sinking.

At track and field things the whistle would blow and I would move my limbs in what I assume was the same manner as other people, and would inevitably get to see everyone else move ahead of me a couple of seconds in and continue to move further ahead as along the course.

Let's just say I was 'it' a lot in games of tag and a constant source of amusement and frustration to my classmates in gym. One year my grip strength was so poor that every time I swung the baseball bat it would then fling out of my hands and land a few feet away. Not that I ever hit the ball anyway.

Oddly enough I look quite fit now and have kept up what small amounts of physical activity I can manage to do.

 

[Marc_NL]

About 54 members replied and of those about 31 had a problem with aerobic energy as a child.

+1 (make that 55 and 32 )

 

[keenly]

No, I was a weightlifter as a teenager, entered a few competitions at school Olympic style clean and Jerk. I was never sick more than a day till I started antibiotics for teenage acne, then digestive issues ensued, then allergies.

 

[Lolo]

I have never been good at endurance exercise or sports but miss being active.

This is a quote from Catalyst (ABC science show) about responders and non responders to exercise.
http://www.abc.net.au/catalyst/stories/4132778.htm

"Now, there are two variants of the gene, an 'X' and an 'R', and you inherit one from each parent. If you have two copies of the 'R' gene, it's likely that you're good at explosive sports like sprinting. If you have two copies of the 'X' gene, then you may be better at endurance sports like marathon running. Most of the population sits in the middle, as 'RX'."

Michael Mosley (BBC) also did a similar segment, had his genes tested and experimented with high intensity training.
http://www.bbc.com/news/health-17177251

I am definitely a non responder.

 

[Sushi]

"Now, there are two variants of the gene, an 'X' and an 'R', and you inherit one from each parent. If you have two copies of the 'R' gene, it's likely that you're good at explosive sports like sprinting. If you have two copies of the 'X' gene, then you may be better at endurance sports like marathon running. Most of the population sits in the middle, as 'RX'."

Interesting--and some of us, like me, were never good at either explosive sports or endurance sports. I wonder is there are some SNPs involved?

 

[Lolo]

Could be genes they haven't looked at yet.

 

[ukxmrv]

Interesting--and some of us, like me, were never good at either explosive sports or endurance sports. I wonder is there are some SNPs involved?

and me as well Sushi.

We have no interest in sport in my family so it was probably disguised for a long time. Looking back it may be a problem for my family being hidden by the lack of interest. Looking at the extended family finds no one with an interest in sports. Not couch potatoes but other interests - painting, writing , singing etc.

At school I did play tennis really well but could only last for a short time i.e. 10/15 minutes before I could no longer hit the ball with accuracy. Was better though with horse back riding which was the only other sport I enjoyed.

That (the lack of endurance with tennis) could have been the POTS which looking back started in my teen years.

Was always at the back of the long runs at secondary school.

I've never had a runners "high" or anything like that. No one in my family (I asked once) ever has.

 

[Wolfiness]

Yup. Also had trouble with strength, turning keys in locks and stuff like that.

 

[Insomniac]

I'm sorry to hear that! Learning where the limits are with this illness is really difficult.

We just recently found something that seems to be helping PEM. When either my husband or I are starting to get PEM, we take either a high quality non-denatured whey protein powder (which provides the precursors for glutathione production) or liposomal glutathione. They both seem to make a noticeable difference and either prevent or drastically reduce PEM. If you haven't tried either of these, maybe it's worth it.

@Basilico
What brand of liposomal gluthathione do you take?
I want to try it.
Does it help for PEM after exercise or PEM after any type of exertion?

 

[Mel9]

I

+1 (make that 55 and 32 )

I had no problems running long distances

 

[Basilico]

@Basilico
What brand of liposomal gluthathione do you take?
I want to try it.
Does it help for PEM after exercise or PEM after any type of exertion?

The brand we use is "Core Med Science" because it's advertised specifically that it's not made in China. We haven't tried other brands yet, so I don't know if it's the best one, but it certainly seems to be having an effect, so we're satisfied with it. The whey we've been using is called "Wild Whey"

My husband and I both get a mild PEM compared to what some others get - it comes on within minutes of doing something, and lasts from a few hours to the rest of the day. I would describe it as feeling like getting hit by a bus, feeling completely incapacitated, intense muscle soreness and weakness and just feeling kind of sick in an unspecific way. All muscles are involved, especially arms/legs (even if they weren't just used).

We've used it both as a preventative measure before doing something physical and also after we've done something physical and are starting to feel something coming on.

For example, a few weeks ago, after taking the liposomal glutathione a few times and feeling noticeably better, my husband wanted to test out if it was actually helping or it was just a coincidence/imaginary. So he did something that would normally give him PEM (changing the battery in his car, which involved carrying the heavy battery down stairs and working the sun). Then he took the liposomal glutathione when he was done with the job and was starting to feel something coming on, and within maybe half an hour, he was feeling fine. He continued to do much more around the house, enough that any of those things individually could normally be too much for him, and he continued to be fine. I should clarify that he has not yet tried to go back to the gym to do weightlifting, that would be the ultimate test, but he's not willing to risk that yet.

At this point, he's gone through 3 bottles of the glutathione and has combined it with some doses of the non-denatured whey, which also seem to help in a similar way (but he can't tolerate too much of it, so I've been taking that one more), and overall his ability to do physical tasks has increased. Last week, we took two 40 minute bicycle rides which we haven't done in really a long time. After the second ride, I was starting to feel crappy, so I took a dose of whey and was ultimately fine.

When I started feeling a really noticeable tiredness in my legs and arms (from doing nothing) that felt like it was about to get worse, I took a dose of whey, and felt much better - the arms and legs went back to normal and it never progressed into something worse.

The rules of when and how much to take are probably different for each person, and I'm sure not all people will be helped by it, but I think it's definitely worth a try. After I bought the liposomal glutathione, the company emailed me that people with chronic health conditions might need to take higher doses to feel an effect. We've found that my husband's sweet spot is 3 doses to feel an effect, so if you take 1 or 2 doses and don't feel anything, try taking as much as you tolerate and see if it helps.

 

[jlynx]

Interesting--and some of us, like me, were never good at either explosive sports or endurance sports. I wonder is there are some SNPs involved?

My fast-twitch muscle fibers likely do not have the alpha-actinin-3 protein, according to 23andMe.

Our muscles are made up of two main types of muscle fibers: "fast-twitch" and "slow-twitch." Exercise performance may, in part, be due to individual differences in muscle composition. Endurance athletes tend to have more slow-twitch muscle, while sprinters tend to have more fast-twitch muscle. Some of the variation in fast-twitch muscle depends on a protein called alpha-actinin-3.

 

[Diwi9]

@Sushi - This is for your tally.

- Very good sprinter, horrible distance runner
- Have never experienced an "endorphin rush"
- Abnormally strong for a female (love weight-lifting) at my best I could do 12 pull-ups and weighed about 140 lbs.

***Basically, activity could be long and slow OR short and fast.

 

[Insomniac]

The brand we use is "Core Med Science" because it's advertised specifically that it's not made in China. We haven't tried other brands yet, so I don't know if it's the best one, but it certainly seems to be having an effect, so we're satisfied with it. The whey we've been using is called "Wild Whey"

.

Thank you for answering.
I will try to find it.

 

[Gingergrrl]

While I was never good at sports, I had no problems with actual aerobic exercise. I could do all types of aerobics classes and worked out with a trainer 2-3x a week at gym. I could run on tread mill, lift weights, and walk for miles.

After being injured by Levaquin (2010), I lost ability to use my right arm and had to rebuild from scratch. But it wasn't until after mono/EBV (2012) and 2nd Virus plus mold exposure (2013) that I developed POTS and continued to worsen until required wheelchair (2014).

Absolutely nothing from my childhood indicated what would happen in my early 40's.

 

[sue la-la]

- age 0 to 10, I got tired easily, hated sports because clumsy & slow. very low iron levels.

- age 11 to 24, always last in long distance runs (I had to walk 95%), out of breath & dizzy tired when playing clarinet. started cycling and became physically stronger, but still very slow. POTS in early 20s.

- age 25 to 35, slowly became very fit active & strong, but never a sprinter. 2hrs/day cycling, swimming, running, walking, yoga. exercise euphoria. BUT - with regular unexplained episodes of weirdness - would become weepy & tired, lie in bed for days or weeks at a time, barely moving [very similar to PEM]. then would slowly rebuild my strength.

a few nasty viruses. stepwise descent to moderate/severe ME, over decades.

I'm wondering about multiple factors, accumulated over time - low iron / nutrition - poor genetic detox - toxins and pathogens.

 

[XenForo]

I got really sick with crazy stiff neck and fever when I was 1? or 2?, maybe. (I might have been older - I was really out of it and so my memory of it could be distorted.) That was the first time I got sick that I can remember. Always sensitive to hot humid days, and got tired as a kid when I was outside lots on sunny days in the beginning of summer, until I got used to the sun again. Threw up lots as a little kid. Got childhood asthma regularly. Couldn't stand for long periods. Never passed out, but knew when I started seeing spots or feeling dizzy to crouch down until it calmed down. In high school mostly, I got loads of upper respiratory stuff that turned into lots of bronchitis over and over. Was okay at gym class, could outrun everyone I think. Was one of the fastest and furthest at biking. Had pretty bad discalculia sometimes, and not at all other times. I found that really frustrating and could never find a pattern although I was always looking for one. My test scores were all over the place, once acing a test, then bombing the retake of the same test. Was always pulling lyme ticks off me, but no lyme disease or coinfections.

 

[Manganus]

I have been thinking about this and remembered that even as a very healthy child I could not run, swim, bike as far as other kids my age--I would just poop out. This is making me wonder if there is a genetic component that affects the production of aerobic energy (or glycolysis) that predisposes us to later develop ME/CFS.

Dear Sushi,
I saw this topic some weeks ago, but wasn't fit for writing.

For what it's worth, I write an answer now.

Before puberty, I had one certain kind of stamina-problem. I got pains from large muscles and/or the periosteum (the membranes that cover the outer surface of all bones).

From the onset of puberty, say the age of ~10, I did bike, swim and walk pretty much. But was never able to compete, except for orienteering, where my brain skills helped. In competition with good runners I was without chances, if they also understood how to read a map.

During a couple of years, I was training swimming quite intensely, like 10 kilometres four times a week. And I did one-day bike-hikes up to 120 kilometres.

Maybe my personality isn't that competitive. In any case, I didn't care about not being good at races and competitions. I just didn't think much about it. I wasn't interested. But who knows what's the egg and what's the hen?

At seventeen I got a series of bad infections. I recovered, partly, although I had to skip school for a year, and continued with new class mates.

Edit:
It had most probably nothing with mononucleosis to do, since I hadn't kissed anyone yet.​

Two years later, it was time for military service. I wasn't surprised when it turned out that I got inflammations in the knees and ankles from running. Running had never been my thing. I wasn't alone. We were a handful of guys who got to walk, in the evenings, instead of the running that our mates did. Typically, we were put on a truck (lorry) and driven out on the country side, some 10 kilometres from our barracks. Then we marched back on foot.

My physic remained quite good until that condition broke out, that I now identify as plausible ME. Then I started to get PEM from biking-hikes in moderate tempo, and also from intellectual efforts.

 

[ChrisD]

I was always quite sporty; playing Football, Tennis, cycling etc. but it is true that I would tire before the other kids/my friends and be panting and out of breath. I didn't have Asthma but seemed to have a lower tolerance to exertion...

 

[justy]

Just to add my experience was mixed - not sporty at all as a child - avoided sport and had stamina issued which were thought to be exercise induced asthma. couldn't run, jog, swim etc.

Then in my early twenties I became really fit and active - swam daily, rode a bike etc BUT I then became ill two years after that. Also when I was ablke to exercise I would push myself hard but my stamina was poor compared to others.

Subsets?