Onset associated with Exercise ?

[Little running man]

CFS diagnosis, at least in the UK, is usually by excluding other things, such as hypothyroidism and some viruses. The Synacthen test isn't used for it AFAIK.

Whether or not one can get welfare benefits doesn't depend on the specific illness, but on the degree and types of disability/incapacity that the assessors believe you have.

How do we manage? On the whole, with a lot of difficulty. If you want more detail have a look in this sub-forum.

Some people tragically don't manage.

It opens your eyes to how people survive/live .....also to the media image of people being spongers if they don't work! Yet this can happen to anyone and if severe enough could/can stop you working! So one day you could be perfectly fine good job etc and the next your life changed forever!!

It puts my being angry I can't run properly into perspective!!!

 

[MeSci]

It opens your eyes to how people survive/live .....also to the media image of people being spongers if they don't work! Yet this can happen to anyone and if severe enough could/can stop you working! So one day you could be perfectly fine good job etc and the next your life changed forever!!

It puts my being angry I can't run properly into perspective!!!

Most of us can't work - see this poll.

Onset is not usually that sudden, but gradual, and I think most of us struggle on for a long time, unable to face/accept the fact that we can't work any more. People lose not only jobs and careers, but also often relationships and homes...and sometimes lives.

 

[bertiedog]

Good advice! Thankyou. I'll get back to the dr about the throat and chase up on the tests he's looking into! I'm trying to elimate all the things I can as I go!

Sorry to hear you are going through this and it does sound a bit suspicious.

Would you be able to get your doctor to run a full viral panel? That could give you a lot more information about what you are struggling with.

The other useful thing you could do would be to do a 24 hour cortisol/DHEA saliva test. You can order these yourself from Genova, it would show what cortisol is in your cells throughout the day and late evening.

Good luck

Pam

 

[hmnr asg]

hi there,
this is exactly what happened to me. I was working out like a fiend. I was a young man who was trying to get jacked. I was doing very heavy deadlifts and squats and all kinds of power lifting moves. In addition i was doing lap swims and doing yoga. God i miss those days
I digress; so this all started in a hot yoga class. I dont know what happened, I felt like i was dying, but i didnt want to quit because, well, i have a large idiot male ego. I finished the class but really felt like i would die. In the afternoon i felt so weird, i felt like i wanted to cry and i was so irritable, one of those days i will never forget. Anyways, the next morning i woke up and i was never the same again. My CFS journey had suddenly begun...
I have to mention that for a few days prior to this i was having weird gastro issues (my stomach was very bloated, VERY). But i wasnt fatigued or had any cognitive symptoms. These all started the day after the damn bikram yoga class.

H

 

[u&iraok]

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've been wondering about this for years. Could it involve Type A people who just push themselves too hard? Or is that too simplistic. It could just seem to be true because a lot of people who post about having ME/CFS say something like: "I was an athlete, super-healthy, always on the go until I got sick..." as a way to show what a shock it was for them to get ME/CFS" but people who didn't work out don't usually start their posts with: "I was a couch potato until I got sick and now I'm really a couch potato...".

lch1 says: "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."

Interesting. I have some mutation, can't remember which one. I did know that exercise depletes anti-oxidants. Could that have a bearing in some way?

alex3619 says: "Over exercise induces a cytokine shift."

Interesting. That's worth looking into.

Forbin says: "Perhaps ME develops due to an unusually strong immune response to an infection. Ironically, you may only be able to mount such a strong immune response if your immune system is relatively healthy to begin with. People who train and are in excellent physical condition may just be more likely to have strong immune systems, either because the training produces a stronger immune system or the people with strong immune systems are more likely train (because they are not otherwise in bad health). Anyway, if this were true, you might be somewhat more likely to get ME if your were in good health previously.

This is somewhat like the theory that younger people were more likely to die in the Great Influenza of 1918 because their healthy immune systems responded so strongly that the massive reaction actually contributed to their deaths."

Who knows? Personally, I was a combination of gradual onset and sudden onset so the gradual included a weak immune system and I over-exercised for my personal limitations. Plus, I wonder about athletes that often get the flu from over-exercising?

(Okay, brain-tired now. Too much multi-quoting, whew. And I didn't use it right, lol.)

 

[u&iraok]

If we're talking a single cause for ME/CFS, we are going to have to find something we are doing (or that happened to us) that people who remained healthy did not do. Millions of people worldwide are exercising at a high level and not getting ME. So exercise is not causal in and of itself. The same is true for infections like EBV. Millions of people get EBV, relatively few develop ME.

If we want to talk multiple hits -- like a genetic immune disorder plus a common infection, or exercising heavily while you have a serious infection, then any of possibly hundreds of combinations could trigger ME. We really have little information to help us sort out what combinations could be problematic. Even then, how many people who exercise while ill (most professional athletes, for example) get ME? Almost none. We need combinations that explain why we got ME and others didn't. Exercise doesn't fit very well as a causal factor.

IMO, any supposed behavioral triggers are more likely to be patient-blaming (even if the patients is blaming him/herself) than any medical reality. We (and others) want to find a reason we got hit with this thing and other people didn't, so we look at what we were doing at the time -- working a lot, exercising a lot, not eating a perfect diet. But correlation is not causation. We need to look at what's going on in our bodies, not what we were doing at the time we first noticed symptoms if we want to track down causal elements.

Yeah, I was thinking of exercise as a possible one of many reasons for person to get sick, rather than just one. Just like a virus or a trauma is a trigger, maybe that last workout is a trigger.

 

[BurnA]

Yeah, I was thinking of exercise as a possible one of many reasons for person to get sick, rather than just one. Just like a virus or a trauma is a trigger, maybe that last workout is a trigger.

Trying to explain the reason is almost impossible. If there is an association between exercise and ME/CFS it could be that fit people develop a susceptibility ( eg strong immune system ) or it could be that people who exercise are more likely to exercise while they have a virus than people who dont exercise.




In my case I know I had a virus, I know i was training ( at what one Dr. called elite level ) several times( 3-4 )a week.
Is there a relationship? I dont know, but I did find it strange that two different doctors who see CFS/ME patients did associate it with marathon runners.
I would love to know if there is an association or not.

 

[BurnA]

Just came across this statement

Immediately before the onset of PoTS, 66% were participating in regular aerobic exercise twice a week or more

From a survey of POTS patients here

66% exercising twice a week or more seems like a large no. I wonder what % of a similar group of healthy people exercise twice a week.

 

[rosie26]

I have yet to read all this thread but exercise sped me very fast to severe ME. The years during my mild ME when I didn't know that I had ME, I was exercising a lot more for various reasons. I can see now how upon looking back that I sped myself faster toward severe ME. It was all just a matter of time.

I often wonder If I had not of increased my exercise in those mild years whether it would have taken longer to get to severe ME. But I think I was always headed there eventually. If I had of rested in my mild years like I am doing now I probably would have slowed the whole process down another 10 years, but who knows.

 

[Keela Too]

.....two different doctors who see CFS/ME patients did associate it with marathon runners.
I would love to know if there is an association or not.

Oh such personal irony here.... I am the non-runner in the family.
My siblings and their other halves all run marathons and have done so over decades....
And it is me the non-runner who got ME

Mind you I did do other sports, but not quite to the intensity of marathon running.
(And yeah I know my family is a small sample size, but I couldn't help commenting on this one... )