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

[Molly98]

I was very athletic in my childhood, teens and until I came down with ME.
I was a high-level competitive swimmer and did most other sports too.

Although my fitness level and training meant that I was far better than the average at distance running. swimming, cycling etc ( I trained up to 4 hrs a day) I absolutely hated distance events I found them really hard and painful.

I was always a sprinter and for example, over 100 m swimming race I would always struggle with the last 25 meters and this is where I would just be desperately hanging on to any lead I had knowing that others would start catching up fast. I have always found it interesting since knowing more about ME that this is precisely the point at which the body switches to aerobic and that last 25 m would be a killer.And the lactic acid and pain OMG nothing like it, until I first came down with ME then bingo, exactly the same response from just trying to get out of bed.

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.

 

[Valentijn]

I played soccer from 7-9 with no obvious problems. I wasn't any good at it, but neither was the rest of the team I seemed pretty normal in PE classes until high school at age 17, when I had a lot of trouble with jogging or running.

In college PE classes (age 25-26) it was pretty hit or miss. I did okay in some martial arts classes, but struggled badly with a walking class and a dance aerobics class. It was especially noticeable that I couldn't improve my walking speed at all. I retook the dance aerobics class several months later with no problems. I had to stop martial arts during law school (age 27) because I was getting "the flu" all the time.

I suspect I have a genetic mitochondrial disease, MELAS. My first possible episode was at age 11 with migraine and a lot of vomiting. I had 3 weeks of hemiplegia at age 27. Then onset of ME symptoms at age 33.

 

[jpcv]

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?

Thank you for this excelent topic
So many interesting responses from members, can´t quote them all.
I was very active before getting sick, two years ago, at 48 years, I was swimming 2 km two days a week and lifting weight two days a week. And I woul also surf once or twice a week if the waves were good. Two weeks after my first symptoms initiated, I couldn´t do anything else.
I eventually got better after some forced rest, tryed to go back to normal life but it was impossible, when I was feeling good I could surf for half an hour, but risking PEM. I tolerate surfing better than swimming, and the PEM I got after swimming were the worst ones.
Now for the interesting part:
When I was in medical school I couldn´t keep a very regular training schedule for obvious reasons. So, whenever I had a lighter schedule, I would go back to swimming, but if I forced myself too much I would invariably get what I call now a miniPEM; the differences being that the symptoms would be lighter and would resolve in a few hours.
One specific symptom caught my atention: CHEST WALL MUSCULAR FATIGUE. The exact symptom I had befor, I have now, it´s very intense when I have a PEM relapse .
So, yes, I think these events are conected.

 

[jpcv]

.....So I have wondered to myself many times, was there always a weakness there,..... .

Yes, I think so, at least for me...

 

[Johnskip]

pre problems I always was in love with basketball and always was in shape never satisfied though on all the effort I put into getting in shape always thought I should had better stamina and questioned this in my own mind all the time also was very fatigued but it was an addiction for me I would just push through no matter what so maybe that's why I'm in this predicament now? I don't know but I'm still trying to push through as much as I can i cant live life any other way I don't want to i noticed the serious onset 15 months ago I am now 50 years old and still trying to stay in shape somehow

 

[Mij]

One specific symptom caught my atention: CHEST WALL MUSCULAR FATIGUE. The exact symptom I had befor, I have now, it´s very intense when I have a PEM relapse .

This could be OI or some form of dysautonomia. I feel pressure on my chest and forehead when I'm upright for too long, lying down relieves it.

 

[Basilico]

I personally have never been an athletic person, have always had a terrible sense of my body in space, and am generally very clumsy. However, I have always thrived with long distance walking.

I got into weightlifting a few years ago when I first got together with my husband, and for the first time felt better physically - I was squatting and leg-pressing with very impressive weights and overall really pushing myself with the best of the dudes, which for a little lady felt great Additionally during this time I was anemic and had orthostatic intolerance, so that really made my gains more impressive (at least to me).

However, I've always had extreme difficulty doing most aerobic things, especially running. I can walk or even ride a bike on flat ground for hours, but the minute I try to sprint or jog, I'm done. I get swollen glands in my neck from running and I have what I jokingly call 'Little Lungs". I've had my breathing capacity tested by a pulmonologist and it was decent, but when I try to do aerobic activity, I usually feel like my breathing can't keep up and I get some chest pains.

I haven't been riding my bike in about 2 years, and when I went out for a 40 minute ride the other day, I got the dreaded swollen glands (which I never got from biking before). I went away by the next day.

Has anyone else ever got swollen glands from running?

 

[tinacarroll27]

I never seemed to have much stamina as a child. I went down with ME/CFS at age 14, so I have had ME all my adult life, so I have never been able to get fit even when the ME was mild. I once tried one of those electric exercise machines (pads you put onto your muscle and stimulate with an electric pulse) and It made me relapse, so I can't do even non aerobic exercise.

 

[TigerLilea]

It's interesting reading everyone's replies. I said earlier that though I wasn't athletic I was always active. However, I never stopped to consider stamina. I was another person who couldn't run for long or swim more than a lap without having to stop and rest. I could garden all day long, hike for long distances without stopping, do housework, paint for hours at a time, but running or swimming lengths I couldn't do.

 

[PDXhausted]

I've thought a lot about this for myself as well.. I never excelled at aerobic exercise, even as a child. I didn't have anything resembling PEM and was ostensibly normal enough, but I never felt good after exercising- like when people talk about an endorphin rush or a "runner's high", I never understood that.

I had a gradual onset.

 

[Sushi]

In my early 20's, I thought I had discovered the answer to this when one of my early ME (mis)diagnoses was "mitral valve prolapse syndrome." It turned out, though, that my MVP was so slight that it could just barely be elicited by taking amyl nitrate (to induce rapaid heart rate). I subsequently saw a cardiologist who could not detect any MVP at all. He assured me that whatever the source of my (ME) symptoms was, it wasn't from MVP. I suppose MVP might have explained my lack of "flat out" endurance in childhood, but I now kind of doubt it. I've had plenty of cardio "stress tests" since then and none has shown anything that would explain this (unless the MVP somehow corrected itself after childhood).

Interesting! My first diagnosis (about 30 years ago) was MVP and I thought "that was it!" I had numerous echos that showed very mild MVP but with very minor regurgitation. I see a cardiologist now for something unrelated, she has done several echos and I no longer meet the criteria for MVP--I didn't change, the criteria did. So now I very much doubt that the supposed MVP was more than one manifestation of Ehlers-Danlos Syndrome.

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 definitely had mild orthostatic intolerance from childhood, although I only realised what it was when it became a prominent part of my ME in my 30s.

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.

 

[mirshine]

The only odd thing I noticed as a child was a strange wheeze when I stood still and swung my arms around horizontally while exercising. This was the only exercise that caused that sound that I can ever remember. Does anyone else experience that wheeze with that particular exercise ?

I did! I thought it was normal After i got the virus that kicked off my ME I really struggled to breath and finally got diagnosed with asthma. I wonder if it was sitting there inactive before.

 

[Countrygirl]

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?

Now you mentioned it, @Sushi , I was the same. I always recall how embarrassed I was to always have to walk most of the 100 yard race at school and how I could only cycle down hill on on the flat (just). I could never manage an incline. Brings back memories!

 

[Basilico]

I never felt good after exercising- like when people talk about an endorphin rush or a "runner's high", I never understood that.

Me too! I have never once experienced an endorphin rush - I always thought it was a made up thing that people claimed they got but I now realize that it's real, I am just incapable of experiencing it.

Also, it is always recommended to take a walk or do some exercise to improve depression in various articles. Anytime I've tried walking when in a bad mood or feeling depressed, I usually get worse (at best it does nothing), so I don't try that trick anymore.

 

[rosie26]

I did! I thought it was normal After i got the virus that kicked off my ME I really struggled to breath and finally got diagnosed with asthma. I wonder if it was sitting there inactive before.

Interesting you had it too @mirshine I think some asthma type symptoms have started with me in the last few years but it's all weird stuff and could be some other respiratory thing. And with ME and the breathlessness we get and it all gets mixed up and complicated. I often wondered whether that wheeze was a trace of asthma.

 

[ahmo]

@Sushi Your description sounds like me. I never moved forward into a state of excellent condition, even though I exercised generally 5 days/week. I was able to do a bit more aerobic, a bit heavier weights, over time, but not much. And I was frequently interrupted by low back or other ailments.

 

[Sushi]

I never moved forward into a state of excellent condition, even though I exercised generally 5 days/week.

Yup! I always made quite an effort to progress in fitness but would reach a ceiling that I couldn't break through. Now I am doing a once per week pilates class--well I am doing half the class as I only do every other rep--and it is done lying down with resistance machines, but I never get more fit. I'm just trying not to devolve into a flaccid blob.

 

[ahmo]

Dr. Michael Mosley made reference to us as a group in his series about exercise. He's also of this group, who just don't get progressively more fit. I'm hoping for walking 3x/week, instead of every 3 weeks!

 

[Neunistiva]

I find this question difficult to answer. How to know what was my natural disposition and what might have been ME/CFS?

I always just assumed I was a brainy kid and that's why I was a bit worse at physical activity than other kids. On the other hand I was stubborn and took everything seriously so I would manage to achieve good results.

I had a sudden onset ME/CFS at the age of 22, but I would have to allow for the possibility that I was functioning at the level of 98% health all my life.

 

[Snow Leopard]

While my ability to sprint was not that great, I always had far more endurance than my peers. I used to love mountain biking, 50 km bike rides etc (aged 12-15 before I became ill.)