Mental Exertion Only CFS?

[Athene]

Hi svetoslav and floydguy,

How long have you two had CFS?

I have this theory that most people don't get PEM in the early days of the illness and DO get PEM after they have been ill for quite a few years.
I also think that if people recover quite a lot and go in or near remission, the PEM can go away again.
I've been ill 27 years now and the PEM comes and goes for me, sometimes it is really bad, sometimes not at all.

Also, though PEM is unusual in Lyme, there are some people with Lyme who do get PEM, so this whole PEM issue is not as clear cut as some doctors seem to think.

 

[svetoslav80]

I have it for 3 years.

 

[ukxmrv]

Athene,

I got PEM right at the start of the disease. It was an acute viral onset and straight away I could not do my normal exercise without suffering bad sore throats /glands/ flu like pain /severe weakness etc after.

Remember the first time I tried to ride a horse (a gentle ride) and was straight back to bed afterwards. Could not even finish a light game of tennis or swim more than a few strokes. Could not walk to the end of my street or home from the bus. The more I did the worse it got.

What happened over the decades is that the PEM in some cases changed so that the onset got longer. For example, the 24, 48 or 72 onset started to be more noticable. I was still very weak after the exercise but the viral symptoms took longer.

This may not have happened if I had not done a GET program and then a modified activity program (GE). I'll never know. My health deteriorated so badly on both of these and I never recovered my pre-program levels.

 

[Hip]

Just to be pedantic, in order to clarify things:

I think PEM is not right term to use for fatigue after exercise, as PEM refers to Post Exertional Malaise, and the dictionary definition of the word exertion is "physical or mental effort".

So if you're tired just after just thinking a lot, that is also PEM.

 

[floydguy]

Hi svetoslav and floydguy,

How long have you two had CFS?

I have this theory that most people don't get PEM in the early days of the illness and DO get PEM after they have been ill for quite a few years.
I also think that if people recover quite a lot and go in or near remission, the PEM can go away again.
I've been ill 27 years now and the PEM comes and goes for me, sometimes it is really bad, sometimes not at all.

Also, though PEM is unusual in Lyme, there are some people with Lyme who do get PEM, so this whole PEM issue is not as clear cut as some doctors seem to think.

About 8 years. I agree the PEM issue is not clear cut and that's why it shouldn't be used to define the disease.

 

[soxfan]

The PEM I have now is much worse than when I was first sick. I would suffer after mostly mental exertion but after a night's rest I would be recovered. Now if I work a 6 hour day it will take at least 2 days to recover. I use to be able to run also and I can't do that anymore either.
I had a remission in 2007 and I felt totally normal again. I could work 25-30 hours a week without suffering afterwards. My sleep was better and I woke feeling like I had actually slept.
Been sick for 6.5 years now and I definately can't do what I could even a year ago.

 

[svetoslav80]

The PEM I have now is much worse than when I was first sick. I would suffer after mostly mental exertion but after a night's rest I would be recovered. Now if I work a 6 hour day it will take at least 2 days to recover. I use to be able to run also and I can't do that anymore either.
I had a remission in 2007 and I felt totally normal again. I could work 25-30 hours a week without suffering afterwards. My sleep was better and I woke feeling like I had actually slept.
Been sick for 6.5 years now and I definately can't do what I could even a year ago.

Doesn't sound optimistic at all

 

[Hip]

I had a remission in 2007 and I felt totally normal again. I could work 25-30 hours a week without suffering afterwards. My sleep was better and I woke feeling like I had actually slept.
Been sick for 6.5 years now and I definately can't do what I could even a year ago.

Interesting that you had a remission. I am always interested in remissions, and what might have caused the remission. Any ideas? Change of house or location? Change of medications? Change of diet? Change of habits? Doing something like meditation or yoga?

Did your remission last long (a year?) or was it just brief?

Thanks.

 

[soxfan]

My remission lasted 10 months. I was being treated for Lyme using IV Rocephin. I had been on oral abx for 1.5 years prior. Within 3 weeks of starting the IV I began to feel better. Within 2 months I felt 'normal' again. I was on IV for 6 months when I had a gall bladder attack and had to stop. They put me back on orals but I started slipping backwards. I went back on IV in late 2008 but it did nothing. I now feel worse than I ever did.
I had a totally negative Lyme test and I was tested many times. I started with flu symptoms in 2004 and don't think I will ever know what it first was. I know for sure that I have CFS now. I am not sure it is because of the Lyme ruining my immune system and let the virus's come out. I now test very high on HHV6 and EBV.
I was just tested for Lyme again and it was very negative.

It was devastating to slip back because I had a taste of what it was like to be really living again...

 

[Athene]

Well my theory about PEM didn't hold up, did it?!!!

I have gone into remission three times and they all lasted several years. Each time the only thing that caused it was spending about a year in bed at my parents' house doing literally nothing except eating and resting, and faffing about the house as I started improving. I had no pressure to do anything, no reponsibilities and so I was having stress-free mental as well as physical rest.

The deterioration each time was always precipitated by catching another severe illness (Epstein Barr, Pneumonia and systemic Herpes)

I cannot do that any more as I am married with a child. I think I will probably never get really well again now. It is so frustrating because I know if I could just hibernate in my mother's house for a year like I did before, I'd get better and possibly stay better, at least for a few years.

 

[Tulip]

I have had M.E. for 19yrs. I get both mental and physical exhaustion (post exertional or during) and I simply can not socialise with more than one person at a time, even then I have trouble processing what they are saying. In a group I feel like they are speaking a different language, I just can't understand them! Very embarassing.

 

[soxfan]

I also get the mental exhaustion from being in a group of people or family gatherings..then it will turn into physical exhaustion and I will feel physically drained. I can also get it during the activity. I am pretty sure that is why I have such a hard time working because I work in a pharmacy and am interacting with customers as well as co-workers. I usually can make it through my shift okay but the minute I get into my car to drive home the exhaustion floods me...mental has always been the worse for me.

 

[Athene]

I wonder what it is about interacting with people that is so exhausting?
I can do about 2 hours of translating work on a decent day, but just one hour of teaching (private lesson, not even a class) leaves me utterly destroyed for three days.

 

[Lala]

This all info about B vitamins and detox issue is very unclear to me. I understand that B12 should support methylation, so also detox, but I do not have any negative feelings from it. On the other hand I had very negative feelings from strong B complex, which I do not understand. Perhaps I should continue with it to see whether it changes as you suggest, Athene.

 

[soxfan]

For me I think the interacting with people is exhausting because my brain can't keep up. I don't know it at the time but I can feel it the minute I am out of the situation. Sometimes I can end up destroyed for days after a holiday even though I enjoy myself at the time...I know there is going to be a huge price to pay. That is what people don't understand because they don't see what happens to me the day after or even the day after that.

 

[Athene]

For me I think the interacting with people is exhausting because my brain can't keep up. I don't know it at the time but I can feel it the minute I am out of the situation. Sometimes I can end up destroyed for days after a holiday even though I enjoy myself at the time...I know there is going to be a huge price to pay. That is what people don't understand because they don't see what happens to me the day after or even the day after that.

That's so true, people see you holding it together and they cannot understand the way you collapse afterwards, or how it takes so very long to pick yourself up again.


Lala, I just thought of something.
I have an appalling intolerance (allergy?) to yeast and this makes me so ill I feel poisoned. B vitamins are normally made from yeast, so maybe you should try getting some yeast free ones and see if you are OK with them? B vitamins with yeast make me feel dreadfully ill.

 

[Lala]

Good point, Athene. I have B balance from Swanson http://www.swansonvitamins.com/SW056/ItemDetail I checked them and it looks like they are synthetic or I was not able to find any info about yeast. I will try to keep with them for couple more days and then post, if the feeling improved or not. I used to use B vitamins from yeast at the beginning of my treatment, but I was so totally miserable that I am unable to judge whether they could cause some special problem or not. I certainly did not get the drunk feeling from them. These B's are supposed to improve nerve and brain function and also should increase tolerance to stress according to references, so I will see. I suppose it can work only when taking in the long term.

For me socializing with people is always much more tiring than whatever mental work I do. I suppose we are forced to use our brains more as people are more complicated than computers..

 

[ukxmrv]

I've never been able to take B-multi's. The one with yeast are definitely the worst. Nausea, vomiting and all over horribleness.

However yeast in bread doesn't bother me unless I eat a lot of it. Fermented foods give me the same as above though.

Just staying on topic for a moment though

Is there anything that the brain does or uses that would account for this difference in PEM?

After all if one can run without PEM that means the muscles etc are getting what they need.

Could it mean that the brain only has been damaged by something or it a disruption based on a nutrient that the brain needs more of?

 

[justy]

I know that the brain has a high need for energy from the mitos in the form of ATP, i think i am right in saying that it cant be easily recycled in the brain like it can in other parts of the body. This is from Dr Maclaren Howard and Dr Myhills work, sorry i dont have a link.

I have both the mental and physical PEM also immediate exhaustion. As i have improved the mental PEM has improved the quickest but the physical hardly at all. I have never really heard of mental only M.E, but i have spoken to some who can do unlimited computer work etc even though they are bedbound whereas i have to pace all activities.

 

[Athene]

I've never been able to take B-multi's. The one with yeast are definitely the worst. Nausea, vomiting and all over horribleness.

However yeast in bread doesn't bother me unless I eat a lot of it. Fermented foods give me the same as above though.

Just staying on topic for a moment though

Is there anything that the brain does or uses that would account for this difference in PEM?

After all if one can run without PEM that means the muscles etc are getting what they need.

Could it mean that the brain only has been damaged by something or it a disruption based on a nutrient that the brain needs more of?

Ah, I might know something very relevant to this.
When the body is not making energy from glucose properly (eg A PWC who has an impaired krebs cycle and whose demands have gone beyond what they can produce) the alternative energy sourse is ketones, made from fat. These are by far the main energy source for the brain, far more so than for other organs. So if your brain conks out, that might mean you are failing in glucose conversion to energy production and then also failing in the backup system of ketone production.
I was told by a doctor that the brain, when you are thinking, uses up absolutely loads of calories and oxygen - it places a big demand on the same energy resources you use for physical activity.

If anyone is interested, maybe look at the Wikipedia article
http://en.wikipedia.org/wiki/Ketone_bodies
and see if you think I have understood this ketone business correctly...


Also by the way, at the risk of seeming yeast-obsessed!!!
The yeast in bread has been cooked and it therefore "dead"/inactive, whereas in the other things you mentioned I think it is still alive. I wonder if that is the reason you tolerate yeast in bread? Though that doesn't explain why I don't even tolerate yeast in bread or any other form!