ME/CFS without fatigue

[Danielson]

Has anyone one of you symptoms such as brian fog, cognitive problems (like decrease in QI and difficults thinking clearly, formulating complex sentences, concentrating and reading), mental fatigue, hypersensitivity to noises, memory problems, sleep disorders and urinary frequency which fluctuates a lot in severity and that doctors are unable to explain with neurological visits or with a MRI scan, but without the issue of feeling physical fatigued and without having problem in recovering from physical tasks.

I ask because it seems strange to me that I don't experience the main symptom of CFS/ME but that i experience all of the others, it is possible?
If not, what could the cause for having similar problems without doctors being able to diagnose them through exams be?

 

[Alvin2]

You may not have ME/CFS at all, you could have a multitude of other possible diseases, it may even be genetic.

You may also be in an early stage of ME/CFS.

The information you have provided is not enough to make any kind of determination

 

[Valentijn]

@Danielson - Fatigue isn't the main symptom of ME/CFS. The main symptom is Post-Exertional Malaise (PEM), which generally involves the exacerbation or onset of muscular, neurological, and immunological symptoms approximately 24 hours after exertion.

Basically being too active makes us very sick afterward, similar to having the flu. This usually involves physical activity, but can also result from cognitive activity (foreign language is the worst for me).

A few people seem to only have the crashes from cognitive activity, without physical limitations. Cognitively-triggered crashes are a bit different, at least in my experience, in that while physical crashes cause cognitive symptoms, cognitive crashes don't cause the full-body symptoms I get with normal PEM. But there's still a delay of about a day or so, in the onset of PEM symptoms after excessive cognitive exertion.

In either case, PEM can largely be avoided by pacing. For physical exertion, that can mean confining our activity to X minutes out of every hour, and avoiding activities known to previously trigger PEM. Cognitive exertion can be similarly paced, and it's especially important not to push your brain to do to too much at once, especially if warning signs like a headache or other symptoms are already present.

Laying down can also help with cognitive function, and sometimes there is a problem with orthostatic intolerance (OI) which results in insufficient blood and oxygen getting to the brain. OI can be tested for, and is often treatable.

 

[Forbin]

In the first couple years of illness, I would not have characterized my symptoms as "fatigue" (this was several years before they came up with the term "Chronic Fatigue Syndrome"). I would have thought of "fatigue" only in terms of a response to lengthy exercise, or some taxing mental activity.

Instead, I just felt sick, like I had the flu. Some people call that "fatigue," but I think "malaise" is closer to the mark.

I had "muscle weakness" in that my legs would occasionally become shaky / wobbly, threatening to fail beneath me. This was most similar to the kind of "muscle failure" you'd get if you tried to hold a heavy weight at arm's lengths for any extended period of time (which I assume is a lactic acid thing - or maybe, in the case of my legs, hypoglycemia). Again, it wouldn't have occurred to me to call this "fatigue" because there was no significant prior exertion. I was actually quite concerned that it was MS or something.

Later, I clearly developed orthostatic intolerance. I knew I could not stand for long without getting all sorts or signals that if I didn't sit down I was likely to faint. I might have considered thinking of that as "rapid fatigue," but I don't recall doing so.

In my case, my most disabling symptom was the ceaseless vertigo I developed at onset. It probably swamped my perception of a lot of other symptoms. For instance, I only noticed 24-hour-delayed PEM (well before that had a name) after my vertigo improved somewhat around four years after onset. Previously, PEM had probably just seemed like some random worsening. I didn't tell anyone about making the connection between exertion and feeling worse the next day for years, because, frankly, I thought it would sound nuts.

I guess my point it that the so-called fatigue of this illness can take different forms, many of which a healthy person might not be likely to label "fatigue" at all.

 

[Danielson]

How long does a cognitive crash/pem usually last?

you could have a multitude of other possible diseases

What diseases exactly?

Laying down can also help with cognitive function, and sometimes there is a problem with orthostatic intolerance (OI) which results in insufficient blood and oxygen getting to the brain. OI can be tested for, and is often treatable.

What tests should I do to know if I have OI, and how does it get treated?

 

[Invisible Woman]

How long does a cognitive crash/pem usually last?

How long is a piece of string?

We all vary. For example: I vary from @Valentijn in that cognitive exertion triggers the full on symptoms for me just as physical exertion will. How stable my symptoms are, how humid the weather is, how demanding and the type of cognitive exertion will all affect how much effort triggers PEM, the delay in PEM kicking in, how bad it is and how long it lasts.

A simple task today might not seem to take much effort or trigger PEM, but next week the same task could be a real struggle and trigger PEM.

Some folk experience PEM immediately and for some it can be delayed by up to 3 days. As far as I know many of us experience a combination or somewhere in between. But that can change too.

This is why pacing as described above is so important. We live our lives on shifting sands so if you can find some type of stable baseline it can make it easier to manage cognitive and physical demands and help make things a bit more predictable. However, ME/CFS is a fluctuating condition so no matter how well you try to manage it, it can still all go wrong.

 

[Alvin2]

so no matter how well you try to manage it, it can still all go wrong

This should be on a billboard

 

[Danielson]

What diseases exactly?


What tests should I do to know if I have OI, and how does it get treated?

Could you answer this questions please?

 

[Invisible Woman]

The ME Assoc. (UK) Purple book is written for both patients & doctors and gives details of other conditions that should be ruled out before diagnosing ME/CFS. This is something you could take along with you when you go to see your doctor.

 

[ahimsa]

What tests should I do to know if I have OI, and how does it get treated?

Orthostatic Intolerance (OI) is fairly common in patients with an ME/CFS diagnosis. There's a lot of information out there, and patients vary widely in both the types of OI that they have and whether they respond to treatment, but I'll try to give a few helpful links.

One place to start is by reading Johns Hopkins patient handout (it's 27 pages long but the first 3-4 pages are enough to give you an overview and see if your symptoms match):

http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf (PDF file)

And here's a video about POTS (specific kind of OI) made by the group Dysautonomia International:

https://www.facebook.com/DysautonomiaInternational/videos/1079102622188616/

You also might want to look through messages in the forum section called Problems Standing: Orthostatic Intolerance; POTS

One of the biggest clues that I had OI was that my symptoms improved fairly quickly after I sat down and got even better if I lay down flat. Another big clue was how much worse even mild heat made me (heat leads to dilation of blood vessels which means blood pooling in the extremities). This means that warm showers were one of the worst things because they combine standing and heat (these days I use a shower stool and set the water temperature to cool/tepid).

If your symptoms match some kind of OI then you should try to find a doctor who knows about autonomic dysfunction (also called dysautonomia) in order to get tested. At the very least the doctor should do some in office testing. However, this will miss quite a few folks who do have OI. A better idea is to get a tilt table test.

I hope this helps.