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

[ash0787]

nope, I could average 15 mph on a road bike, despite what the psycho babblers might have you believe

 

[LivingwithFibro]

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, absolutely. Right from the age of 6. I was always last in my school races and I always dreaded them because I would feel off for at least 3 days (and that was pre-cfs), if I do such a thing now I'm ill for weeks.

 

[Chriswolf]

As a matter of fact, yes.

Although it wasn't extreme, I had considerable endurance problems in terms of cardiovascular performance, even as a child, most notably when swimming.

When I was 16 I started exercising and working out.

When I first started running it was a hard-won accomplishment to even jog 3km without having serious cardio issues. My lungs would crap out before my legs ever did.

 

[bspg]

Gym class was hell for me growing up. I never performed well. I believe I had exercise-induced asthma (running=lungs on fire) which was never treated (and certainly didn't help things) but I also didn't have much endurance. The fastest mile I was ever able to run was 12 minutes, and that was after a month of training.

Interestingly, in my late teens/early twenties, I used to weight train at the gym but never really put on muscle or gained much strength. I was incredibly frustrated that I never seemed to progress no matter how much I worked out or how long I stuck with it.
I wonder now if it had something to do with ME/CFS.

 

[Dance]

Good at sports, good coordination, good balance, fast, not much upper body strength. Good at sprints. When I started aerobics I my early twenties I had two problems, I couldn't follow the routine very well and I had little endurance even after doing it for years several times a week. I enjoyed weight training but they were light weights. So I think the answer is yes, when I compared my endurance to others.

 

[me/cfs 27931]

No childhood problems with exercise. I didn't quite have the athletic ability or coordination of my siblings, but was pretty normal compared to my peers. Did a lot of surfing, running and bike riding. Played some league sports like baseball, basketball, soccer.

ME/CFS onset was age 15.

 

[ljimbo423]

I could run a 7 minute mile when I was 15 and not even be out of breath. When I was 18 though, I got a viral infection that triggered my first experience with cfs. After I cleaned up my diet and almost completely quit drinking, about 2 years later.

I was able to work doing hard labor 40 hours a week, without much problem. However, I was never able to do even small amounts of aerobic exercise, like 15-20 minutes, without becoming fatigued.

So even though I was able to go back to work full time after the first time I was hit with cfs, I was never able to do aerobic exercise again, without undo fatigue.

 

[Arius]

I had asthma.

 

[anne_likes_red]

I've been meaning to add something to this thread...in case it's related.
My children, a teenager and a tweenager, are both pretty active and do well at school sports and PE, but neither train. (They're generally involved with music at the weekends instead of competitive sports where I think they would likely be expected to push themselves harder and more often.)
On the occasion they do push harder for a sustained period I've noticed (and they've noticed, and one or two teachers have noticed too) they get much more flushed in the face than their peers. I think they may have a lower threshold for something? Pretty sure I remember this same phenomenon myself from childhood. Anyone else?

 

[Forbin]

I'd never really heard of this before, but there is something called "exercise-induced asthma."

Exercised-induced asthma is a narrowing of the airways in the lungs that is triggered by strenuous exercise. It causes shortness of breath, wheezing, coughing and other symptoms during or after exercise.
http://www.mayoclinic.org/diseases-conditions/exercise-induced-asthma/basics/definition/con-20033156

Signs and symptoms of exercise-induced bronchoconstriction may begin during or a few minutes after exercise, and they may persist for 30 minutes or longer if left untreated. The signs and symptoms may include:

• Coughing
• Wheezing
• Shortness of breath
• Chest tightness or pain
• Fatigue during exercise
• Poorer than expected athletic performance
• Feeling out of shape even when you're in good physical shape
• Avoidance of activity (a sign primarily among young children)

http://www.mayoclinic.org/diseases-conditions/exercise-induced-asthma/basics/definition/con-20033156

When I was in Boy Scouts, there was a troop meeting where they decided to have everyone simultaneously run back and forth across a football field several times. It was a "race," so it was a "flat out" run. Halfway through, I was so breathless that I could not continue. I was the only one who had to stop. One of the Scout leaders came up to me and said, "Touch of the asthma, I see." I thought, "That can't be it." I'd never had an asthma attack in my life, but I did become breathless fairly quickly when "racing" on foot or in a pool.

I can't say for sure if it was "exercise-induced asthma," but it would explain a lot (...about these childhood episodes).

 

[Valentijn]

I can't say for sure if it was "exercise-induced asthma," but it would explain a lot.

I was diagnosed with it at one point, but I think it was a form of exercise intolerance that I also get with ME.

 

[pcmenten]

I was a long-distance runner, cross-country skier, could swim for miles, climb Mt. Rainier, etc. I still have a good constitution, but more and more these days, I get PEM if I do something vigorous. The PEM has been around for a long time, but I had attributed it to being out of shape.

I'll still work/play hard once in a while, but then I'll pay the price. Lately, I have stayed active with dancing. It's not aerobic, but it does keep me somewhat fit without the big PEM crash.

 

[Neunistiva]

On the occasion they do push harder for a sustained period I've noticed (and they've noticed, and one or two teachers have noticed too) they get much more flushed in the face than their peers. I think they may have a lower threshold for something? Pretty sure I remember this same phenomenon myself from childhood. Anyone else?

My mother has been telling me for years that back when I was a child she always noticed I got more flushed in the face than other children and that it always made her worry. My PE teacher also once commented on it. I dismissed them, thinking my skin was just a bit more sensitive and it got irritated to salt in the sweat or something. She would love to be right

 

[taniaaust1]

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.

undenatured whey gave me more stamina too and was making quite a difference (obviously I must be deficient in gluathione) .. but I became intolerant to the powder I was taking

 

[taniaaust1]

I did a lot of cycling (steady touring speed) and I was very active compared to most kids. But I remember once around age 11 at a school athletics day I had to run in a 500 m race. I started well, then around a quarter of the way it was like someone pulled the plug and all the other competitors overtook me. I remember the teachers being as surprised as I was!

same... I was extremely athletic and played lots of sports, trained twice daily..

but had twice incidences, one at the age of 10 and one when I was in first or second grade highschool 14? in which the plug suddenly was pulled on me and I was suddenly left unable to walk, once when out shopping with my nanna and once when I was on a school hike which I then couldnt finish.. (like that feeling that bricks on feet thing where legs suddenly are so heavy I was struggling to lift them). I was completely well when this happened too.

I assume I must have a mitochondrial problem.... It was so strange at the time that I still remember it. I was so confused by "what is wrong with me?"

 

[JaimeS]

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?

Yeeess.

I was talking with my middle sister, AnthroPhD, when she said, "but you know... you've always been tired."

I was surprised by the comment and said something neutral like, "do you think so?" But the comment kept rising to my mind again and again.

I wasn't always tired, was I? Well...

Actually...

Hmm.

Definitely better and worse at certain points in my little life, but at adrenarche (8 or 9 yo) and at puberty (12 or 13) there were especial dips / crashes. And now that I think about it, between ages 9 and 12, it was my mother's concerted efforts that kept me healthy: over the summer, she fed us a preponderance of veggies and practically chased us through the outdoors. I was the only 10 year old I knew on a summer diet, and my sisters and I always came home from summer vacation slender, strong, and glowing with health.

But by my early teens I was exhausted again -- so exhausted that I talked to my doctor about it a few times. Heard: "you're just out of shape". (I was a totally normal weight / height). "It's normal to be out of breath after exertion... don't think about it so much." They wouldn't believe me that I had trouble breathing. ("Are you sure it isn't just when you're running? And walking up the stairs? Haven't you ever been out of breath after exercise?" "Well -- then, too, sometimes, but --" "See? You're just out of shape.")

[Edit: just remembered my mom telling me: "you sigh a lot, have you noticed?" at high-school age. "Are you sad?" I turned to stare at her in surprise: I wasn't sad in the slightest, so I wasn't sure what she was talking about. Then I caught myself taking a really, really, really deep breath and whooshing it out. Once she pointed it out, I couldn't 'un-feel' it. I was doing it all the time!

Oxygenation problems seem to be present ever since early adolescence...]

I was very 'sporty' in my 20s, but looking back, that was because it was the only way I could maintain what other people thought of as a healthy energy level. More active from age 16 or 17 onward. From age 19 on, I was definitively 'health-conscious': ate organic, gave up gluten, didn't drink soft drinks, exercised several times a week, and was a paragon of healthy virtue... it was how I kept hanging on. I wondered why everyone didn't just live this way, when you felt so much better! I thought people who ate junk food and claimed to feel okay were just lying to themselves. I didn't realize how many patches I was slapping over the problem.

I wonder how many others were exercising so much and taking such careful care of ourselves "at onset" because it was the only way to feel all right. Perhaps we were 'at onset' awhile before that... and what we mean when we say 'at onset' is actually 'at the crisis point' or 'at the point of no return'.

By my late 20s, nothing I could do could stem the tide anymore. One health crisis after another and I was eventually knocked flat. A superficial look makes it seem as though I was fine and then I wasn't, but a more cautious examination shows minor warning flares my whole life. I know, I know, recall bias... but.

So, @Sushi , yep -- "insidious onset" is an accurate medical term, probablies.

Maybe this is the difference between the endocrine system being a big player versus only immune dysfunction being the predisposing factor.

 

[hben]

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?

Ditto. But I became very flexible as a teenager. Could walk and hike but couldn't run or play high intensity sports that interested me

 

[Sushi]

But I became very flexible as a teenager. Could walk and hike but couldn't run or play high intensity sports that interested me

Did you ever investigate whether you might have Ehlers-Danlos Syndrome? I ask because you mentioned flexibility. I myself have EDS.

 

[hben]

Did you ever investigate whether you might have Ehlers-Danlos Syndrome? I ask because you mentioned flexibility. I myself have EDS.

Hmm... I've looked into EDS and many other diseases that I previously didn't know existed, but ruled it out. Definitely have lots of elements of it though.

I was extremely active as a kid but it was perplexing, given my eagerness plus the athletic ability of my parents (father went to college on an athletic scholarship and was a state champion athlete. Mom was just super strong for a woman, and had worked in many jobs that required stamina and strength.)

It was shocking to me when, at 18, I paid for my first aerobics class with my very own hard earned money, that I totally sucked at it. I mean, I was seriously worn out after the first quarter of a 45 minute beginners class. Who can't manage aerobics at 18? I could climb trees and mountains, walk for miles, arm wrestle, swim for hours (not competitively), play volleyball and baseball, but couldn't jog, run, play an intense game of Frisbee (required running) or even dance (my next great idea was intense dancing classes since I was terrible at aerobics) without burning, being unable to breathe, getting a lactic acid like burn or otherwise feeling like I'd die if I continued.

I have discovered that even though I have a higher sense of rhythm than most, I am below average in coordination, as is obvious in any yoga, dance, aerobics or group exercise class I've ever taken. I'm just not as coordinated as other people. Beyond that, I am clumsy. Not so terribly and continuously clumsy to be considered a danger to others - but just have a much higher than average rate of dropping things, knocking things over, stubbing toes, bumping into things, miscalculating steps, etc, than others do. When they were 5 and 7, my own children had to make me pinky swear to never, ever walk around the house without slippers or shoes again for the rest of my life(!!!) because I'd broken my little toe more times than we could count. I still wear slippers or shoes indoors at all times. Foot armor required. One day last year I didn't wear slippers for the first time in 15-20 years, and I stubbed and broke my toe.

But I'm stronger than most women - not just because of my height/size. I can lift very heavy items, move large pieces of furniture around, etc, just as well as or better than most men my age. CFS made me exhausted and overall weak, but it somehow didn't ruin my strength. Like stretching, it's just something that doesn't challenge me much.

Re flexibility, it's definitely a weird and interesting connection with fibro and CFS that I share with many others. When I was 7, other girls at school could do the splits and twist and turn in gymnastic type ways I couldn't. That all changed by the time I was a teen. Other people marveled at my flexibility. (Not so flexible that I can touch nose with my tongue though but could contort and bend easily .Was considered "double jointed"). Yoga-like exercises and stretching became my outlet but I was never good at the balance side of those exercises. I am not sure I'd pass a typical sobriety walking test. I've been wobbly in doctor tests to see how well I could walk a straight line, but I think the docs assumed I was exaggerating the difficulty. I can still (after the morning fibro stiffness goes away), touch the floor with my palms while bent forward. It's always been so easy that it's difficult to image that most people can't.

 

[Sushi]

Who can't manage aerobics at 18? I could climb trees and mountains, walk for miles, arm wrestle, swim for hours (not competitively), play volleyball and baseball, but couldn't jog, run, play an intense game of Frisbee (required running) or even dance (my next great idea was intense dancing classes since I was terrible at aerobics) without burning, being unable to breathe, getting a lactic acid like burn or otherwise feeling like I'd die if I continued.

I was exactly the same.

I can still (after the morning fibro stiffness goes away), touch the floor with my palms while bent forward. It's always been so easy that it's difficult to image that most people can't.

Yep, even though I don't "practice" flexibility exercises, it is totally easy for me to place my hands flat on the floor.