Onset associated with Exercise ?

[BurnA]

There seems to be many patients who associate onset with exercise ( eg prolonged or intense physical training ) to some extent. I am curious to know who would relate to this as there seems to be almost nothing in the literature about CFS onset and physical exercise. Yet the internet is full of ancedotal stories of individuals and sportspeople developing CFS ( their definition ) which they associate with training and or training with a viral infection. Is this an undiscovered subgroup or an imaginary subgroup ?

 

[A.B.]

I wonder if they're confusing overtraining syndrome with CFS.

Then again, we don't have a clear picture of what CFS is so the distinction is somewhat arbitrary at this point.

 

[BurnA]

I wonder if they're confusing overtraining syndrome with CFS.

Then again, we don't have a clear picture of what CFS is so the distinction is somewhat arbitrary at this point.

I suspect some are certainly suffering form overtraining or fatigue rather than CFS and that it why I am interested in feedback here as i imagine most people here would not make that misjudgement.

I posted this elsewhere but in this video ( at 33:45 ish ) the Dr. makes reference to training with virus as if it's a common onset situation however the literature does not discuss this to my knowledge.

 

[panckage]

When we get sick we look to attribute it to some cause. Until research can find figure this out one way or another we really dont know

 

[Nancih]

This is strictly anecdotal, but I was a gym rat before I became sick. I'd trained regularly for about eight years. I had begun to slow down in the last year; it became harder and harder to drag myself to the gym, and I couldn't lift as much or work out as long. I don't think I overtrained - I worked with a trainer and was in the gym usually three days a week, but as I said, toward the end I began to slow down.

Then I had an infarted spleen and kidney out of the blue. I believe this was related to a birth control product I was using, but there's no way to prove that. That was the turning point for me. I ran a fever daily and went through several doctors - and most of my savings - until I found a diagnosis. That took almost three years. So I don't know that there's any kind of causal relationship between my gym habits and the onset of ME/CFS. I still run the fever, have neurological pain (Lyrica has helped) and a host of "smaller" symptoms, along with the terrible fatigue. After the infarct, my doctor attributed my fever to sloughing of necrotic tissue. But the fever never abated. I kept going back to the doctor asking what was causing the fever, pain and fatigue, and got replies such along the lines of "you're perfectly healthy, there's not a thing wrong with you, you need to see a psychiatrist, you need to take up Tai Chi". The last one is my personal favorite.

 

[Keela Too]

I wonder if the infection has started the process, but then an event triggers a worsening? That could be a big event like a marathon I suppose.

I'm thinking about what happened to me. I had a succession of viruses - and thought I was just having a bad winter (I was struggling to keep up with work etc. but doing okay). However an operation must have been a big trigger to throw me to a level where work was impossible.

I then had a few other times when I did a bit more than sensible (although very little by normal accounts, because by this time I wasn't very well at all) and each time I lost another bit of ability.

So perhaps that could be the link?

 

[Nancih]

I'm not sure. I've done a lot of reading about this condition, but I have brain fog, deluxe edition, so I can't remember what I learned where. I have seen people link the condition to mono (I had a very severe case when I was in college). Ever since that time, any time I would get overly tired, I would have a feverish feeling. Of course, if I took my temp, it would be normal or lower than normal. In recent years, I've deduced that "normal" for me - or any time when I feel okay, I run about 97.4. Anything much over that and I start feeling bad. In the past month or so, my fever has been almost constant and it has been miserable. Can't really link it to any exertion or stress.

But I've wandered way off topic. I don't think it really proves anything, but I was a gym junkie. One of my great joys was that I would frequently be lifting heavier than some of the men in the gym. But then I got slower and weaker until I had a major health crisis, and I just never recovered.

I've read that ME/CFS can be triggered by any major physical, mental or emotional stress. I've read that having mononeucleosis can lead to ME/CFS later in life. I've also been told that having an abusive childhood sets you up for ME/CFS later in life. There is all kinds of speculation out there, and I'm glad that it seems, at least, that the medical profession is beginning to take the condition seriously and it's being studied. But I'm the trifecta: abusive mother, mono in college, infarct in my fifties, and now I can add weight-lifter/gym rat as another possible contributing factor. I can't get qualified for disability, but I sure can ring all the bells when it comes to contributing factors!

 

[butterfly7]

Ive always been a fitness freak ,and noticed the last yr was harder and had to pull back ,had a tooth out and a crazy sore throat virus with raging fever and bang been really crook and fatigued going on 6mths now... cant wait till its over the cfs I mean lol.....

 

[user9876]

There seems to be many patients who associate onset with exercise ( eg prolonged or intense physical training ) to some extent. I am curious to know who would relate to this as there seems to be almost nothing in the literature about CFS onset and physical exercise. Yet the internet is full of ancedotal stories of individuals and sportspeople developing CFS ( their definition ) which they associate with training and or training with a viral infection. Is this an undiscovered subgroup or an imaginary subgroup ?

[/QUOTE]

Perhaps there is a gradual onset thing where people get a trigger and mild effects but then exercise and get much worse. There are a lot of people who report getting really bad after GET where they push themselves too hard.

The onset could be the random generation of an anti-body but then there needs to be other effects to disrupt various cycles within the body. Or it could be a anti-body->infection->mild->exercise->severe model where an infection is needed but could be relatively low level.

 

[lansbergen]

Or it could be a anti-body->infection->mild->exercise->severe model where an infection is needed but could be relatively low level.

Or infection->antibody-> mild->exercise->severe.

 

[TiredSam]

Or infection->antibody-> mild->exercise->severe.

That's what I think happened to me. I was training 3x a week (weights and cardio), had been for years, feeling great and not over-doing it at all (I wasn't so much into performance and muscle building as generally keeping fit and avoiding back trouble in middle age). Then ME arrived (sudden onset probably because of a virus but how can I possibly know how or why it started?) and after a horrible 6 weeks it slowly eased off, so I went back to sport.

This pattern repeated for most of the first year - rest a few weeks until I feel better, start sport again, symptoms return, stop sport for a few weeks / months until I feel better, try sport again etc. It was the fact that I was sporty that helped me make the link between physical activity and my symptoms worsening. Finally after being symptom free for a month I tried light sport again (30 mins cardio) and crashed the next day for weeks.

So for me sport helped me identify the link between physical activity and my symptoms. I wish I had stopped sport earlier, but how could I know at the time that whatever I had wasn't going away any time soon? On the other hand I was lucky to diagnose myself in the first year and stop sport while I was still fairly functional.

I don't associate sport with the onset of ME, but with the onset of PEM.

 

[Chrisb]

Similar here. I had atypical glandular fever and the consultant told me it generally resolved over time, but he did have a case of someone in whom it was still going on at three years. So after three years of relapsing and remitting I thought that what I needed to recover that last 15% was a little mountain air. I thought I could have a little walk in the snow up Mont Blanc at 85% capacity. I could, but decided to come down by the standard route instead of what was planned, and found the last mile on the level hard going. A couple of days later I couldn't make it to the bottom of the route on the Charmoz, turned left instead of right, abseiled off and that was the end of my climbing.

For my part I think CBT and GET are to be recommended. My version would be: believe that you might be ill and that recovery is not assured. If what you are doing makes you relapse, do less until relapses no longer occur and then think again

 

[Mij]

The M.E doctor I saw 24yrs ago told me I had atypical M.E and advised I do absolutely nothing, even when I felt recovered. Too bad I didn't liisten.

 

[lch1]

There seems to be many patients who associate onset with exercise ( eg prolonged or intense physical training ) to some extent. I am curious to know who would relate to this as there seems to be almost nothing in the literature about CFS onset and physical exercise. Yet the internet is full of ancedotal stories of individuals and sportspeople developing CFS ( their definition ) which they associate with training and or training with a viral infection. Is this an undiscovered subgroup or an imaginary subgroup ?

I firmly believe that daily, strenuous exercise in SOME people, especially with MTHFR mutations, can definitely result in physical problems and CFS. One reason is that they force glucose burning and raise the blood sugar too far, too often. This may result in a diagnosis of Type II diabetes, when they think they are actually preventing such a disease. The absolute rule as you get older is to wait 48 hours between strenuous workouts, where you can do some leisurely walking or stretching on the "off" day. If exercise is forced while suffering a viral infection, that can be almost permanently debilitating. As we age, we just can't fight multiple battles at once!

 

[JaimeS]

you need to take up Tai Chi". The last one is my personal favorite.

I might take up Tai Chi. It sounds like a fun, relaxing, gentle movement.

I will, of course, let you all know 'when' it cures me.

-J

 

[lch1]

I very highly recommend Ann Smith DVD, she is a ballet (former) master and has developed phenomenal routines for non-ballet men and women. I recommend this DVD: "Ann Smith: Inhale, Exhale, Stretch & Move, slow motion, therapeutic, weight bearing, aerobic, isometric exercise for arthritis, depression, fibromyalgia, lung disease, and many others." It is on Amazon. It's just right and extremely short and non-strenuous, it seems effortless--yet is is highly effective (proof is the lean, muscular bodies of ballet dancers). It is much more full than Tai Chi (which is very complex and does not really speak to the muscles). And it's not foo foo, you won't be at a barre--it's free standing.

 

[TiredSam]

The M.E doctor I saw 24yrs ago told me I had atypical M.E and advised I do absolutely nothing, even when I felt recovered. Too bad I didn't liisten.

Wow, what a doctor! And 24 years ago too. Now we just need them to all be like that, it's obviously possible.

 

[Mij]

@TiredSam

He co-authored the draft for the original version of the ME/CFS consensus document. I was fortunate because there was no internet back then. I would have been lost.

 

[Sparrow]

I wasn't exercising any more than usual when I first got ill - mine had a sudden viral start. But it makes sense that if immune dysfunction of some kind is involved, that heavy exercise could make problems more likely. Same with stress, lack of sleep, or anything else that normally throws the immune system out of whack.

 

[BurnA]

I wasn't exercising any more than usual when I first got ill - mine had a sudden viral start. But it makes sense that if immune dysfunction of some kind is involved, that heavy exercise could make problems more likely. Same with stress, lack of sleep, or anything else that normally throws the immune system out of whack.

I know wat you mean, but my query is if heavy exercise could make problems more likely by throwing the immune system out of whack then surely the incidence of ME /CFS ( and other immune diseases) would be much higher in athletes than non athletes? And if this was the case it would be established by now ?