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

[Cinders66]

I was able to seem normal in activity and life and was generally very physically active - hiking and team sports- probably much more than considered average . However as a child and teen and before getting ill I found swimming and cross country running & aerobics extremely exhausting (I'd collapse on the floor afterwards but no PEM) which was odd as I was generally sporty and could play netball/basketball etc regularly and as well as my peers. Maybe these are most physically straining types of exercise, what they call physical endurance. I even had to refuse to do a fun run on the sand / beach as I felt it would be crushingly tough on my legs and body and just thought I was a wimp/others odd for doing something so gruelling. I went to the Drs regarding the weakness/breathlessness after these specific activities suspecting asthma as I was generally pretty fit so it didn't make sense but there was no sign of it and I recieved a pat on the head.

Looking back I definitely see this as a red flag for energy production issues that existed before the whole multi system disease with marked incapacition and symptoms attacked. So yes, I think it points to an Archiles heel regarding energy in some, in some way biologically but it was such a slight "sign" none of us suspected anything seriously abnormal. If only we had

 

[jpcv]

...Looking back I definitely see this as a red flag for energy production issues that existed before the whole multi system disease with marked incapacition and symptoms attacked. So yes, I think it points to an Archiles heel regarding energy in some, in some way biologically but it was such a slight "sign" none of us suspected anything seriously abnormal. If only we had

...

I agree with you. Funny that my brother was always stronger than me..We had a joke, he would call me Hump, that character in JackLondon´s novel Sea Wolf, a brainy type of guy, but physically weak.

 

[Molly98]

Which brings up the question: since EDS is a genetic disorder we would have had it from birth. Do any of you who had problems with intense aerobic exercise as a child (think kids racing) have EDS? We don't know the role of EDS in this whole picture.

Good question @Sushi and this is another thing I have been wondering about recently.

I do not have a diagnosis of EDS yet as I have not been officially assessed for this, however, when I was recently diagnosed as having POTs the specialist noted that I scored between 5-10 on the Beighton test and had stretchy skin and very hypermobile joints. As a kid my hips I could just pop my hip joints in and out of socket at will ( sounds gross I know) and bend my body into all sorts of contorted shapes. I also did a lot of gymnastics as well as swimming.

I have realised that as a child/ teen I did have difficulty standing still for any length of time, or even sitting up unsupported at a table or desk, which seemed utterly ridiculous given how physically fit and athletic I was
I was just very floppy. I was the thorn in my mother's side because I could not just sit upright or stand still in church, I literally had to move or fidget.

Given what I know now about POTs and EDS I think I very naturally was drawn to spend half my life in the swimming pool. I always felt more normal in a swimming pool than I did on land, so I don't think it is any coincidence that I ended up pursuing swimming rather above my other sports and gymnastics as a second.

So to sum up, I think the whole POTs EDS Joint hypermobility may have played a role for me personally and perhaps this also left me with a vulnerability to develop ME later after a severe viral infection.

What is also of interest to me is that I did reach a point in my training around age 15/ 16 where I developed what would now be referred to as ' overtraining syndrome', back then usually referred to as burn out.

Training then was not based on individual capacity and my coach just pushed and pushed as to our physical limits every day. There were virtuality no rest days and competitions every weekend. I reached the point where I would go backwards instead of progressing, pick up all sorts of viral infections and just physically felt as if I could not move in the water.

It is interesting what predisposes some athletes to this and not others while undergoing a similar workload. It will be interesting to see what Ron Davis finds in his research.

 

[Little Bluestem]

I am old enough that there was not sports for girls in the rural area where I grew up. I did ride my (one speed) bicycle all around the neighborhood. Since I grew up on a farm, the neighborhood was several square miles. Being on a farm, I also handled hay bales and feed bags that weighed almost as much as I did.

I did a lot of walking and one backpacking trip. I was the smallest person on the backpacking trip, so was carrying the highest percentage of my own weight, but had no trouble keeping up.

The amount of weight I could carry surprised my co-workers on one of my jobs.

I do recall not being very good at foot-racing, though. When running full speed, I 'ran out of breath' more quickly than the others.

 

[Sushi]

I do recall not being very good at foot-racing, though. When running full speed, I 'ran out of breath' more quickly than the others.

Interesting and my childhood history with exertion is similar. Only "racing" type exertion pooped me out. Of course that has changed with ME and most all exertion poops me out.

 

[soti]

Add me to the list - red in the face, huffing and puffing and bringing up the rear. Could never really run. I really tried to exercise and did get rather fit in my 20s by going to the gym and doing weights and doing what my sis-in-law lovingly calls the "hamster machine". And then it all went downhill... or maybe uphill is the better metaphor?

ETA: gradual onset, fwiw.

 

[bananabas]

Count me on the "athletically troubled" list too, Sushi!

 

[MeSci]

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. (@Rose49 )

Looking back, there was never I time when I could run any distance, jog, take an aerobics class etc. Of course this was greatly exacerbated when I developed ME/CFS.

Do any others have this history?

Yes - I always had trouble swimming, although maybe I just never got the technique right.

Also couldn't run a good distance.

But otherwise I was pretty fit, and represented the school at running, jumping, etc. (despite being short).

 

[Forbin]

Which brings up the question: since EDS is a genetic disorder we would have had it from birth. Do any of you who had problems with intense aerobic exercise as a child (think kids racing) have EDS? We don't know the role of EDS in this whole picture.

I don't have EDS (although I have an odd ability to point my thumb 90 degrees to my fingers and then "close" the top joint of my thumb. It invariably provokes an "Ewwww!" reaction in others ).

Thanks for reminding me. I remember that I used to "grey out" on sudden standing from teenage years, so that was probably early OI. It is a much bigger problem now.

Yeah, I had this as a teenager - mainly from standing up from a deep crouch, but sometimes just from rising up from sitting. Sort of a "grey out" that looked a bit like TV static and took a few moments to clear. Other people have mentioned this, too. It didn't always happen, but I could usually sense when I was susceptible. This pretty much vanished after my teens, and was gone before I got ME in my early 20's. Now in my 50's, I have noticed it again on a couple of rare occasions.

 

[valentinelynx]

I was a swimmer from age 8-18. By the last few years I was working out 5 hours a day 3 days a week and 2 1/2 hours a day 3 days a week (one day off). Just prior to getting ill I was in the second-best shape of my life. This time I was dancing: 2-3 hours of dance class 3 days a week. My body hates inactivity. I am just now recovering from a bad slump. I am now if the worst shape of my life, I think. I just started weights again. Aerobics wrecks me, but the right amount of weight workout feels good and perks up my body.

 

[Sandman00747]

I was a swimmer from age 8-18. By the last few years I was working out 5 hours a day 3 days a week and 2 1/2 hours a day 3 days a week (one day off). Just prior to getting ill I was in the second-best shape of my life. This time I was dancing: 2-3 hours of dance class 3 days a week. My body hates inactivity. I am just now recovering from a bad slump. I am now if the worst shape of my life, I think. I just started weights again. Aerobics wrecks me, but the right amount of weight workout feels good and perks up my body.

Weighlifting perks me up too @valentinelynx , but it is a fine line we walk. If I go a bit over my limits it can be a day or two where I feel beaten when I first arise and struggle

to get to a cup of coffee! It then takes 2-3 hrs. to loosen up this tin man body! And I was always in top condition doing 40 minutes every evening on an elliptical machine for years.

Those days are long gone! Never had much trouble with anything as a kid except for childhood asthma which returned with this illness. I wonder if there is some connection?

 

[TreePerson]

No I was fine with exercise right up until I got ME by which time I was 35. I was a fairly active child only averagely prone to colds and viruses. The only thing that was odd is that severe stress and or lack of sleep and or alcohol would give me leg ache. I couldn't stay out all night even as a young person.

 

[jlynx]

Yes, I was very active as a child but seemed to have lower stamina than others with some things. I was not a good runner at all. When I ran the mile in school I was always one of the last to finish. I did do gymnastics for 10 years which is very physically exerting, but the exertion is more in spurts and not constant like with soccer. (For instance I was usually in a class of about 10+ other girls. So I would take my turn and then have a lot of resting before my next turn.)

I remember dragging my feet after a certain amount of walking too even when very young. Hmmm....

 

[Lily Valley]

When I was diagnosed some yrs ago the doctor came to the conclusion I've had ME since childhood just because of problems with exercise or sports, and I remember it as yesterday that I wasn't able to walk so much without getting really exhausted. That was a year before I began school. And it has been like that since then, I'm almost 50 yrs old now.

 

[Insomniac]

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. (@Rose49 )

Looking back, there was never I time when I could run any distance, jog, take an aerobics class etc. Of course this was greatly exacerbated when I developed ME/CFS.

Do any others have this history?

Yup, Me too,
Sudden onset at age 15. I was always the last at sports in school.
I just assumed I was bad at sports. That's all.

 

[bertiedog]

I was very athletic in my childhood, teens and until I came down with ME.

So I have wondered to myself many times, was there always a weakness there, in that it did not seem to hit most of my fell competitors so hard, and no matter how much training I did, it seemed at my aerobic threshold I would always blow up, or was it just my natural tendency, body type, sprinter, fast twitch muscle fibres and all that.

I have also wondered that too. I was also very athletic in childhood and early teens and my record for the 100 yards was never broken until it changed to metres which was about 15 years later. I was 12 or 13 at the time. However a few years later I was completely useless at 400 yards, never had the stamina and in my 20s before getting sick I could never play for my tennis club because I couldn't manage playing the 3rd pair in doubles because my legs hurt so much and I was out of energy.

I also have fast twitch muscles as per 23andme.

Thankfully I am mildly affected now and regularly walk 9000 steps unless I have one of my frequent viruses when my energy plummets and I am in full blown ME/CFS mode then.

Pam

 

[Hip]

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.

I was definitely in the poop out category as a child at school: I would rapidly run out of stamina in any aerobic endurance sport (eg, running more than say 200 to 300 meters, swimming more than 4 lengths, etc). However, in non-aerobic strength-based sports I was fine, in fact I was pretty strong in non-aerobic sport like weight lifting.

It was just the aerobic sports requiring a long term output of energy that I was poor at. I could run 100 or 200 meters very fast, but if I continued running past 200 meters then it was if the energy and strength were suddenly sucked out of my body. My limbs would turn to rubber, and I'd lose a lot of muscular strength. At the same time, my mind would also become a bit woolly and vague, as if the energy drain was affecting my ability to think.

I was the only kid in my class like this.



I think this sudden pooping out after around 200 to 300 meters of running corresponds to aerobic glycolysis kicking in: when you start exercise, for around the first 1 to 3 minutes you can rely on anaerobic glycolysis (which does not require oxygen) to provide energy; but then after 1 to 3 minutes of exertion, anaerobic glycolysis runs out of steam, and so aerobic glycolysis (requires oxygen) kicks in and takes over. Ref: Your Four Energy Systems.

So me pooping out after around 1 to 3 minutes of exercise (200 to 300 meters of running) corresponds to aerobic glycolysis kicking in — and I am guessing that as I child I may already have had a blockage in the aerobic glycolysis system, so this may be why I pooped out after a couple of minutes of exercise.



Looking back, it seemed to me that I always had some very mild element of ME/CFS even as a child, but so mild that you would no even call it ME/CFS.

Interestingly, my viral tests showed that I have 3 coxsackievirus B infections, one of which (coxsackievirus B4) was active, with the other two not very active at the time of the test.

I think the active coxsackievirus B4 infection may be the one that triggered my ME/CFS, but I now wonder whether I may have picked up the other two coxsackievirus infections I have at a very early age as an infant, and whether the presence of these two coxsackievirus infections could explain the very mild ME/CFS-like exercise endurance issues I had at school.



I'd really like to see more research into possible connections (in healthy people) between enteroviruses such as coxsackievirus B and echovirus, and physical energy deficits.

I wonder whether people who are otherwise healthy, but have some exercise endurance issues, may be harboring a chronic enterovirus infection in their muscles, just as ME/CFS patients do.

 

[Mij]

Perhaps we should start a poll to get an overview on this subject. It appears most who have commented had less endurance stamina before ME?

I was still able to run after a few months of the initial viral onset, I just didn't get the "high" anymore. Of course I gradually got worse over time from exercise and then PEM set in.

 

[Sushi]

Perhaps we should start a poll to get an overview on this subject. It appears most who have commented had less endurance stamina before ME?

I've been counting but it isn't exact as people had different degrees of difficulty. Here is what I have so far: About 54 members replied and of those about 31 had a problem with aerobic energy as a child. Course my stats are filtered through brain-fog so they aren't necessarily exact, but I'd guess this is far more than you would find in a healthy population.

 

[rosie26]

Thinking a bit more about how I was as a child some things do come to mind but not sure if it means anything. I did notice I always found it hard to keep up with my friend and her sister when going for very long bike rides, they were more strongly built than I though. Also I remember finding tennis hard. Members of my immediate family could play tennis fine but I never felt like I had a strong enough arm to hit the ball back and preferred to play badminton instead.

And as a runner I was always average who was usually at the back of the pack taking my time and puffing.

I was also a marching girl and had to quit after a couple of years due to tendonitis in one of my ankles. It completely locked up and took many months to come right.