CFS/overtraining

[Little running man]

This is similar to my story except I am also Lymepositive. I was lucky that I learnt from PR not to overdo the physical work so I stopped all running and gym

I can now work, sitting in front of a computer writing, as long as I go home at lunchtime for a sleep

Sleep, breakfast, sleep, drive to work, wprk, drive home, sleep, drive to work, work drive home and sleep, eat , go to bed

Not much time left over for anything else
But I do love my work

I still dream of running

It's tough to do the day in day out stuff without the freedom to run hey? I'm sad that you can't run now, but it seems that there's more of us runners on here than I thought! Maybe the will be some trigger that involves serious exercise?

 

[Little running man]

I used to get regular running dreams, long before Forrest Gump was on the scene, and after I lost my capacity to exercise safely. Sadly the closest I get now, since I can struggle to even walk across a room, is running in computer games.

Being able to run again is high on my wish list. Not at the top, but close.

Can't believe so many active people get struck down!! Let's face it if we could run we'd run .....it's the mindset we have. So to be reduced to doing almost nothing is crazy.

Yet there seems to be a lot of doubt out there! When my dr suggested ME could be the cause (I'm still in denial at the mo) and I told my run buds this when they ask, I see alot of doubt on some of their faces,even though they know the ammount of training I do. Frustrating!

But to be only able to walk accross the room Alex bust have been soul destroying.

 

[MeSci]

Could you elaborate? As I am new to this I just reached out to the main charity I could find and it was useful to see what CFS/ME was.

Where to start? It's possible that they are improving, but I still think there are better ones - like Phoenix Rising!

AfME were founded by what I call the psychoquack mob, I believe - the particular group of psychiatrists/psychologists who muscled in on ME/CFS decades ago and claimed it as basically a psychosomatic illness (they have since invented several other words for 'psychosomatic', presumably to confuse people). Thus the psychoquacks are responsible for the fact that there is almost no proper treatment available in the UK for the illness, and that patients are instead sent for psychologically-based treatments that are more likely to harm them.

AfME still often seem to promote psychoquackery, and when I was still using their website they had no platform for scientifically-literate people unless they were also health professionals - which in many cases in the UK is in fact a contradiction in terms! For example, I commented on a piece of research they had in their research section, but never received a reply - turned out no one was monitoring the section. Maybe they still aren't.

Up until recently they were coming up with what appeared to me to be phony new 'initiatives', like 'Time for Action' which everyone was being urged to put their names to, and get their friends and families to do the same. When I pressed them to tell me what exactly it was about, they listed a load of activities that Action for M.E. was already supposedly committed to doing.

I think the ME Association is better, as are a few others in the UK. But before thinking of joining anything, do a search on Phoenix Rising. It is a mine of information!

 

[MeSci]

I drink far to little fun I'm honest especially when training but even with tablets I still pee way to much/often I'm normally between 60-63 kg at the mo I'm probably 65kg 167cm tall

Do take care not to get dehydrated. That is something that people with ME are prone to, along with electrolyte/mineral deficiency - we tend to lose them a lot in urine.

 

[PandaDarling]

Where to start? It's possible that they are improving, but I still think there are better ones - like Phoenix Rising!

AfME were founded by what I call the psychoquack mob, I believe - the particular group of psychiatrists/psychologists who muscled in on ME/CFS decades ago and claimed it as basically a psychosomatic illness (they have since invented several other words for 'psychosomatic', presumably to confuse people). Thus the psychoquacks are responsible for the fact that there is almost no proper treatment available in the UK for the illness, and that patients are instead sent for psychologically-based treatments that are more likely to harm them.

AfME still often seem to promote psychoquackery, and when I was still using their website they had no platform for scientifically-literate people unless they were also health professionals - which in many cases in the UK is in fact a contradiction in terms! For example, I commented on a piece of research they had in their research section, but never received a reply - turned out no one was monitoring the section. Maybe they still aren't.

Up until recently they were coming up with what appeared to me to be phony new 'initiatives', like 'Time for Action' which everyone was being urged to put their names to, and get their friends and families to do the same. When I pressed them to tell me what exactly it was about, they listed a load of activities that Action for M.E. was already supposedly committed to doing.

I think the ME Association is better, as are a few others in the UK. But before thinking of joining anything, do a search on Phoenix Rising. It is a mine of information!

Ah thank you for clarifying @MeSci. Very helpful! Personally I had not looked further into their website beyond the symptoms and who it effects etc - since I got diagnosed I had to find out what CFS was.

Until I recently got this book by Campling and Sharpe which I have found very useful for knowledge on the illness, I thought ME and CFS were different. I don't know if anyone else here has read it - hoping that hasn't got a bad rep either! Although saying that I have not yet gotten to the treatment discussion section. . . .

 

[worldbackwards]

AfME were founded by what I call the psychoquack mob, I believe - the particular group of psychiatrists/psychologists who muscled in on ME/CFS decades ago and claimed it as basically a psychosomatic illness (they have since invented several other words for 'psychosomatic', presumably to confuse people).

That isn't true actually. AfME was founded by patients at the end of the eighties who thought the The ME Association towed the line too much! It mutated into it's current form in the early 2000s, around about the time they first took government funding, if I recall rightly.

Until I recently got this book by Campling and Sharpe which I have found very useful for knowledge on the illness, I thought ME and CFS were different. I don't know if anyone else here has read it - hoping that hasn't got a bad rep either! Although saying that I have not yet gotten to the treatment discussion section. . . .

Oh, we don't like Sharpe either! I suspect you'll find the treatment section hauntingly familiar. The point about ME and CFS is that no-one knows what they are: CFS is a wastebasket diagnosis for anyone with an illness that involves Chronic Fatigue, of which there may be one or many.

Sharpe has built a career on the claim that there is only one, it can invariably be treated with CBT and GET and if it can't then it's the damned patients who are at fault. Patient experience doesn't bear this out (we have often found them damaging) and his position looks pretty shaky. His latest research, though highly spun in the media, showed no real difference between CBT/ GET patients and controls at follow up.

This is the best book I've read:

http://www.amazon.co.uk/M-E-Chronic-Fatigue-Syndrome-Practical/dp/0007333552/ref=sr_1_1?s=books&ie=UTF8&qid=1451476984&sr=1-1&keywords=anne macintyre

Very good on management and the like. A lot has happened this it was published, but I wouldn't expect to find it out from Sharpe and Campling.

 

[PandaDarling]

This is the best book I've read:

http://www.amazon.co.uk/M-E-Chronic-Fatigue-Syndrome-Practical/dp/0007333552/ref=sr_1_1?s=books&ie=UTF8&qid=1451476984&sr=1-1&keywords=anne macintyre

Very good on management and the like. A lot has happened this it was published, but I wouldn't expect to find it out from Sharpe and Campling.

Thanks for the link - i'll be sure to get a copy! So glad I found this forum!

 

[MeSci]

That isn't true actually. AfME was founded by patients at the end of the eighties who thought the The ME Association towed the line too much! It mutated into it's current form in the early 2000s, around about the time they first took government funding, if I recall rightly.

I sit corrected.

This is the best book I've read:

http://www.amazon.co.uk/M-E-Chronic-Fatigue-Syndrome-Practical/dp/0007333552/ref=sr_1_1?s=books&ie=UTF8&qid=1451476984&sr=1-1&keywords=anne macintyre

Very good on management and the like. A lot has happened this it was published, but I wouldn't expect to find it out from Sharpe and Campling.

Here is another good book. Lots of ideas on self-treatment. And if you fancy trying any, you can come and discuss them here first!

 

[PandaDarling]

I sit corrected.

Here is another good book. Lots of ideas on self-treatment. And if you fancy trying any, you can come and discuss them here first!

Thanks I shall do definitely!

 

[worldbackwards]

Here is another good book. Lots of ideas on self-treatment. And if you fancy trying any, you can come and discuss them here first!

Is there any decent books on ME that aren't about 20 years old? Or are we just showing how long we've been ill?

 

[PeeWee]

Although its a different order of magnitude, my partner used to run a weekly 5k and was within days of her first 10k race when the illness hit - the first sign was her training times inexplicably got much worse and the training became exhausting - followed within days by a rash. She tried returning to running on three or four occasions last year, each followed by a recurrence of illness. Daily notes of health and activity indicated a clear correlation between returning to running and getting ill again, so she's stopped - but not being able to run is a real loss for her.

Her illness pattern includes a very frequent recurrent sore throat. Also exhaustion, light sensitivity and recurrent rashes (originally diagnosed as shingles). She's always had poor circulation and low pulse rate. She recently (16 months into the illness) started taking a tai chi class, which seems to provide exercise without the exertion of running; doing the class has coincided with less difficulty with cold (which we take to mean improved circulation) and an increase in pulse rate. But it isn't running!

 

[PandaDarling]

Although its a different order of magnitude, my partner used to run a weekly 5k and was within days of her first 10k race when the illness hit - the first sign was her training times inexplicably got much worse and the training became exhausting - followed within days by a rash. She tried returning to running on three or four occasions last year, each followed by a recurrence of illness. Daily notes of health and activity indicated a clear correlation between returning to running and getting ill again, so she's stopped - but not being able to run is a real loss for her.

Her illness pattern includes a very frequent recurrent sore throat. Also exhaustion, light sensitivity and recurrent rashes (originally diagnosed as shingles). She's always had poor circulation and low pulse rate. She recently (16 months into the illness) started taking a tai chi class, which seems to provide exercise without the exertion of running; doing the class has coincided with less difficulty with cold (which we take to mean improved circulation) and an increase in pulse rate. But it isn't running!

I really need to find something to replace running/ Maybe a gentle ballet stretching class or yoga class once a week Helps with the fybro pain too. Sorry to hear about your partner :[ Great to hear that tai chi classes are working. I am trying to find an activity I can do as I am luckily not bed bound. I only have a few days a week where I can't get out of bed. Although I don't often get very far - I stay indoors a lot.

 

[BurnA]

Being able to run again is high on my wish list. Not at the top, but close.

I still dream of running

All I want to do is cycle again! If I ever get better I will spend a year cycling - that is my dream and that dream keeps me going ...

 

[Little running man]

Even though the distances are different it's still the same pattern and other than the rash it's similar to me as well (especially the sore throat).

There definitely seems to be a link for many of us......I'm wondering if their could be a link as overtraining syndrome has most of the CFS symptoms as well and if you carry on training with it (which most of us do) it can leave you not able to recover.

Just a thought of course as I haven't to experience in this ...... But someone said earlier everything unexplained with fatigue gets lumped together as CFS ....maybe for some of us it's the exercise that's the root cause?

Any thoughts?

 

[PandaDarling]

Even though the distances are different it's still the same pattern and other than the rash it's similar to me as well (especially the sore throat).

There definitely seems to be a link for many of us......I'm wondering if their could be a link as overtraining syndrome has most of the CFS symptoms as well and if you carry on training with it (which most of us do) it can leave you not able to recover.

Just a thought of course as I haven't to experience in this ...... But someone said earlier everything unexplained with fatigue gets lumped together as CFS ....maybe for some of us it's the exercise that's the root cause?

Any thoughts?

I thought maybe it could be that but I went from highly active to sedentary and it has not gotten any better over a year :[ I find mental tasks also knacker me out :[

 

[BurnA]

Just a thought of course as I haven't to experience in this ...... But someone said earlier everything unexplained with fatigue gets lumped together as CFS ....maybe for some of us it's the exercise that's the root cause?

Any thoughts?

It could be related but there is no evidence. Plenty of people get cfs/me who aren't particularly active but I do believe there is a subset of very active patients.
I think it's hard to say exercise is the root cause because there are millions of people exercising who don't get me/cfs.

 

[Little running man]

I thought maybe it could be that but I went from highly active to sedentary and it has not gotten any better over a year :[ I find mental tasks also knacker me out :[

I read that if you go into adrenal fatigue you may never recover to run again. With similar symptoms of mental fatigue/memory problems and forgetting things.....it is just a thought. But it seems strange so many athletes seem to have CFS ....I just feel there's a link. Not that I have any science behind this just what I'm reading and a feeling I have.

 

[PandaDarling]

I read that if you go into adrenal fatigue you may never recover to run again. With similar symptoms of mental fatigue/memory problems and forgetting things.....it is just a thought. But it seems strange so many athletes seem to have CFS ....I just feel there's a link. Not that I have any science behind this just what I'm reading and a feeling I have.

No adrenal problems where picked up in my bloods. I don't know if that means they ruled it out?

 

[PeeWee]

Maybe there's something many people have ... some of them are very active. Maybe the something can be made worse by exercise. Not caused by it, or many more athletes would have it, and the lots of less active people who have it wouldn't. Maybe its made worse by other things too - active people become aware of the exercise link; people in other situations may be aware of other links. We don't know - and maybe the medical profession don't either. But the results of this illness are serious enough that significant lifestyle changes make absolute sense if they even might help.

 

[Little running man]

It could be related but there is no evidence. Plenty of people get cfs/me who aren't particularly active but I do believe there is a subset of very active patients.
I think it's hard to say exercise is the root cause because there are millions of people exercising who don't get me/cfs.

Yes I agree that many different people get CFS but there's no test for CFS so everything gets lumped together that involves fatigue.

So for example .....I went to the Drs told them my symptoms (told him about my exercise) did a few blood tests then he decided it was CFS.

So WHAT IF .... I was severely overtraining pushed through this to adrenal fatigue. All the symptoms would be the same (in fact mine are) ......then I rested tried again and crashed (this is the same for adrenal fatigue) and the more often you rest and return to exercise the worse you get?

But going to the dr would just confirm its CFS (rightly or wrongly) .......I had to push to get adrenal glands checked and if I hadn't have insisted he wouldn't have looked into it......

So what if this SUB group is due to adrenal fatigue through overtraining. Remember those athletes that overtrained but rested in time would have recovered fully. That leaves those who pushed through overtraining/virus and probably a outside stress (job worries/deaths/etc) totally fatigued and unable to return to training.

Make any sense?