Wednesday, February 15, 2012

Mental Energy and ME/CFS

I have been struggling to think of a good title for this post for days, even though I had only written it in my head (I write so much that way!). It's something I've been wanting to write about, but I still don't know what to call it, so I will just jump in.

I just spent three weeks in a severe crash, feeling worse on some days than I have in years.  I am now feeling much better and have resumed my own version of "normal," and I have been struck - not for the first time - by the stark difference in my mental state between a crash and a "good" day. I'm not talking about the emotional effects of severe illness, though those are very powerful as well.

No, what I've observed, yet again, is a startling difference in mental energy that is intrinsically related to immeasurable things like motivation, drive, and desire. When I am severely ill with physical symptoms that are hard to describe - exhaustion, lack of energy, that all-over flu-like achiness - there is also a mental sluggishness present, a lack of motivation that makes accomplishing anything at all (regardless of the physical symptoms) a monumental struggle.

Cognitive dysfunction has never been a big problem for me, not even at my worst times in the past 10 years of illness.  Most of the time, my only sign of cognitive problems is some mild aphasia (word-finding difficulty) which is annoying for someone who makes her living writing but doesn't seriously interfere with my life, thanks to Word's built-in thesaurus. When I am severely crashed, I do experience some slightly increased brain fog, but, again, nothing severe. I have always been grateful for this blessing.

But this lack of mental energy (isn't there some official term for this? I guess it might be malaise, but I really hate that word; certainly it's not the dreaded F word) is overwhelming when I am crashed. For instance, let's say that on a bad crash day (like I experienced last week), I have cut my to-do list down to just three essential tasks - calling a doctor's office to make an appointment for my son, filling out a form and faxing it to my son's school for a scholarship application, and writing an e-mail to my editor. The lack of motivation and drive is so all-encompassing that it could take me days just to accomplish those few simple tasks.

Yes, I am feeling exhausted and achy, but it's not those physical symptoms keeping me from doing anything. It's a total lack of mental energy.  This is something almost impossible to describe to healthy people (including doctors), unless perhaps they have recently experienced a bad flu. When I'm in that state, I dread each coming day, facing that lack of drive and motivation, trying to get something done when I feel like my head is encased in Jell-o.

In contrast, when I finally feel like myself again (still with CFS but not so badly crashed), I am stunned by the sudden feeling of mental clarity, by the desire and the simple will to accomplish something.  I wake feeling glad to be awake, looking forward to the day to come. I feel motivated and productive and happy. It is such a stark change to how I feel when I am crashed that I feel full of joy.

My poor son is filled with this feeling, this lack of mental energy, every single day lately and is trying to finish his senior year of high school encompassed by this mental lethargy.

I think this is probably the worst part of ME/CFS, though it's something that is rarely talked about, unnamed, and never examined by doctors or researchers.

Is it the same for you?


Renee said...

I do identify with what you are saying Sue. It is so hard to describe it, but it takes such effort to do anything involving our minds. I can actually see it descend on Joel when he gets really fatigued. Nothing works in his brain either and when I talk to him he has to work so hard to take in and absorb what I say. I struggle with it some, but I have noticed for me lately it is a terribly wired feeling in my brain where all works too fast. In the past I would accomplish only 1 phone call a day...or pay the bills a little at a time...and have Joel check them to make sure I wrote the checks right, etc. I interchange words and forget words too at times. As you said, when it leaves you feel so so clear minded. Amazing difference. Good post, Sue with great description of a little talked about part of CFS/ME and Lyme too.

At Home on the Rock... said...

Interesting post, Sue. For me, this is the biggest part of having CFS and never really thought about the fact doctors and researchers never talk about it. With the onset of my CFS and all during the height of my illness I would identify this symptom as one of the largest (if not the largest). I couldn't even think about things (which for me is a must....I think everything through step by step, several times before actually doing it)

When my mental clarity started to return, I was able to take further steps (ie think things out) in other areas to help myself improve. I remember when it first started to improve...I said to my homeopath "The energy in my head is improving" (still didn't have the right words to express myself...but that's what it felt like).

Now when my mind goes in the opposite direction (races thinking many things through) I become overwhelmed and have learned I have to shut it down or I will crash.

Toni said...

I know just what you're talking about, Sue, but I don't think I've ever seen anyone write about it before. It's surely a symptom that should be added to the ME/CFS list. I don't know what causes this lack of mental energy. Perhaps it's physically based. Perhaps it's that all of our mental energy is going into our physical symptoms—assessing how bad they are, figuring out how we can best deal with them. Perhaps it's that all of our mental energy goes into stressful stories that start to spin out when we're feeling so sick—Is this going to last for weeks? Is this the new 'me'?"

This was so enlightening for me to read because I suffer from this but had never put it into words—it's not brain fog—it's something else. It's just what you describe. I'm going to print it out.

Jennie Spotila said...


Anonymous said...

Ditto. Mine is from arthritis, fibro, and ehlers-danlos. I teach college classes online so I can't take a day off, much less more than one day. But there are times when it's all I can do answer questions (email or in the course) and I'm really up the creek if I happen to have that brain-drain on the day after due dates when I have a bazillion essays to grade. I'm not sure how I muddle through -- habit after grading the same essays for years on end I guess. But when that brain-drain is going on, I dread my work and it's very difficult to stay focused.

Lisa Petrison said...

I wonder if it's a mild version of this:

Sue Jackson said...

"Energy in my head" is a great way to describe it!

Sue Jackson said...

I agree, Toni - this is distinct from brain fog though often lumped together with it. Probably has to do with the endocrine system - not enough of certain neurotransmitters or something.


Sue Jackson said...

Interesting article, Lisa - could be something similar in CFS.

Anonymous said...

Just read this with my brain all clogged up. I'd say neuro cognitive problems are my worst or maybe just my most intolerable symptoms. And I've been frustrated by the lack of any agreed upon medical or vernacular language to describe them. I rely on analogy and metaphor which works just so far; and there are easily six quite discrete different versions of how it feels to me. I'll sometimes say "it hurts to think"; or "my brain feels swollen" or " my brain feels like a harddrive that's crashed" At it's worst, I will say that looking at a sink full of dirty dishes needed washing is "too hard a mental task". etc. When my head clears occasionally it's a joy to be able to do simple tasks around the house, e.g., glean off 1/4 of my desk, what fun!! These symptoms are worsened by poor sleep, but exist even if I some how manage better sleep; I'm writing this but still feel brain-dazed and have no idea if number two on my to-do list (number one is breakfast) to go shopping will be doable or not as it can get worse quickly or stay constant . . . anyway, glad you wrote about it. So often post exertional fatigue is couched in terms of a physical energy crash but for me just as often it's a mental crash.


Sue Jackson said...

Michael - those are all very descriptive ways to describe this mental lack of energy - I especially like "my brain feels swollen." Funny you mentioned a sink full of dirty dishes. I would normally never leave dirty dishes lying around, but when I am crashed that barely, I just can't muster the energy for even that simple task.

I hope you were able to get to task #2 today!


Anonymous said...

Just so you know, your brain uses 50% of your energy output.

Kerry said...

I'm just going to say a firm "yes".

Being in exactly that state right now, I'm afraid I've only skimmed your post and even more lightly skimmed the comments as I can't process them properly right now.

I feel like my brain gets trapped in a circle and just goes round and round on the same incoherent thoughts until I find myself thinking "that doesn't make sense".

Nice to know I'm not alone. Although I'm sorry all of us have to live with this.

Baffled said...

I've had serious neuro symptoms since the fifth month of my onset of CFS/ME. I have described some of my crashes as coma like. I just can no longer function. I don't fall asleep so much as shut off, first my body and then my brain. I don't wake up but rather gather enough energy to move, the ability to process information returns later. I wouldn't be surprised if the lack of energy in the brain is related to the Burst Suppression mentioned in the article. I've found that taking in simple sugars during one of my severe neuro crashes helps so I'm suspecting that it is due to lack of glucose available to the brain.

"burst suppression shifts the brain into an altered physiologic state to allow for the regeneration of ATP" ATP is generated by mitochondria from glucose. The brain is the largest consumer of glucose in the body. CFS/ME causes problems with the production of ATP by the mitochondria. Sounds related to me.

upnorth said...

Glad you are at least back to your normal. So sorry Jamie is still crashed. You know, I've never had much of the cognitive problems that most people report (except in the first 2 years), however, this lack of mental energy is something I do get when crashed and you describe it so well. For me anyways, it is similar to a bad influenza so perhaps it's related to immune system or cytokines or something?

Southern Calif Mom said...

Hi Sue,

I found your blog through Google as I was trying desperately to find something to help relieving my symptoms. You are describing exactly how I feel! I have taken 2 days off last week and then this week. Last night I was in so much pain I could not sleep. My doctor told me today I probably have a viral infection. (He was the one who diagnosed me with CFS a few years back). I need a new doctor. Thanks for your website. It's good to find out I'm not alone and I'm not crazy ...

Beatrice Desper said...

Yes! yes! yes!
It's as if my neurons don't have enough juice in them.

Anonymous said...

Sue, I'm enjoying your blog as the mother of an adult son recently diagnosed with chronic Lyme. The cognitive dysfunction you describe has been the bane of his college and early career years. In the literature, I find references to it as "Lyme encephalopathy," encompassing such troubles as concentration and short-term memory as well as attention, planning, and organizing. His caregiver has suggested a trial with Ritalin or Adderall. But so far, just having the affirmation of a diagnosis and the hope of a treatment plan seems to have boosted his mental energy enough for now. You do more service than you could possibly imagine by sharing your thoughts and experience this way. Many thanks, from one mother to another.

Anonymous said...

"It hurts to think"-- yes!! It's a strange concept to explain to people that you could have a hard time making through an hour-long meeting when you're sitting still. I had this problem, as well as the brain fog on and off for about 18 months. Now it's been almost completely gone for the past 6- so don't give up hope, folks! Whatever is going on in the brain seems to be completely reversible, at least in my experience.

(For the record, the positive changes were *not* associated with any particular treatment. In fact, I quit all treatments including antibiotics for possible lyme- they didn't help- and focused on just managing the symptoms).

Hang in there~


Reading the Signs said...

Sue, I find that beyond a certain point my brain begins to 'scramble' - and if I push beyond that then I know I will pay by having to be in that un-nameable state, which I can only feel is connected to lack of vitality. When we are depleted of life-force (essential for any task related to the will) then it is terrible indeed because it goes against every natural instinct. Motivation, drive and desire belong to vitality and life-force. To be robbed of them feels like a kind of death. This is why it is so difficult to speak about.

Anonymous said...

Hi Sue,
Your blog is a lifesaver! Glad to hear your getting better and I pray your son is back to his normal soon!
Question are you still having the sore throat issues? If not are the mushrooms working well for you if so what are you using?

Sue Jackson said...

Sure, I still get sore throats - they are an integral part of CFS, a symptom of the immune system activation. As with most people, the sore throats are recurring - they come on with a bad crash and go away when I am feeling better. In fact, sore throat is a good barometer for me of when I have done too much and am in danger of crashing - even the mildest sore throat (or achiness) tells me I need to stop and rest.

I quit taking mushroom supplements about a year ago. I had taken them for 6-7 years and just didn't notice any difference on them. I now take Immunovir, a prescription medication that is an immune system modulator (which is what mushrooms are supposed to do) and it works very well for me.


Sue Jackson said...

Thanks for your kind words. During difficult times like this, it means so much to me to know that our experiences are somehow helping other people. Good luck to your son.


Tamara said...

Sue, I have been feeling that total lack of brain energy for the last few days. I sit and stare into space with my head too tired to even figure out what to do. I find it highly frustrating and a little scary! As the sun sets on another wasted day and I just hope that tomorrow my head will work better and I can get something done. Thanks for writing about this and validating that it is a real phenomenon.

Anonymous said...

sue, what you are describing here, i actually had neuropsychiatric testing done because mine has gotten so bad. the net-net of what the dr. said is that i test like a 70 year old, a few years removed from full blown alzheimers. i am 47. i have had CFS/ME since college 25+ year ago. i have had to give up life outside of my home and experience tremendous setbacks anytime i expend too much energy - at times a simply shower will render me useless for the day.

while this doctor who did the testing is like SO many others in that he does not believe that CFS is a "real" disease, he was intrigued by the fact that he does believe the results of the testing are due to fatigue and not early onset. can't wait to prove wrong all those who believe CFS/ME is a mental disorder.

on another interesting note, i have never found anything that has helped me to have mental clarity or relieve even a small amount of the fatigue until 4 days ago. a doctor at an emory hospital sleep clinic gave me the antibiotic clarithromycin. she said that they are currently involved in trial with this drug because they accidentally stumbled upon it helping people like me. i have been willing to try 25+ years of any possibility. i am still holding my breath but today i was given one day of clarity of mind (4 days into trying this!) and relief of the fatigue. i cannot even ever remember a day like this. i don't understand it and have no idea if i will be granted another day like this, but i am thankful for a day. (and to those of you who wonder if i know about the side effects of this drug, i do.)

Anonymous said...

Sue, thank you for taking the time and energy to share your struggles. I was diagnosed with CFS 13 years ago. Even though I have experienced numerous crashes and periods of relief, the struggle and frustration do not go away. You really nailed it when you described having a lack of motivation that makes accomplishing anything at all (regardless of the physical symptoms) a monumental struggle. This monumental struggle to do anything attacks my self worth more than the lack of physical ability to do what I want. People who have not experienced this have no idea of the personal devastation. I used to be so productive. I was physically fit and had a position that was challenging both physically and mentally. Now, during a crash, making sure I eat and drink enough during the day is all I can accomplish. Also, my "sore throat" also manifests in vocal chord dysfunction. I cannot even talk during a crash.

Thanks again for validating what so many of us are experiencing. My best to you and your family.


Sue Jackson said...

Hi JC -

So sorry to hear that you struggle with this too. The mental fog is definitely the hardest part to deal with. Fortunately, it doesn't hit me as often anymore - I think the main things that helped have been anti-virals, low-dose naltrexone, and Imunovir.

Good luck and thanks for taking the time and energy to leave a comment!


Vicki (a fibromite) said...

Lisa Petrison, that is a fascinating article...thank you. Great observation.

Unknown said...

Your words Motivation, drive and desire belong to vitality and life-force. To be robbed of them feels like a kind of death. This is why it is so difficult to speak about." SADLY, I RELATE!
Vitality physically or mentally, gone. You put it into words so accurately.
I look at old photos to try to bring myself back to who I was...knowing, I'm in here somewhere.

Sue Jackson said...

Thanks for taking the time (and energy) to comment. I'm so sorry to hear that you are affected this way,too, and are struggling so.

I wrote this blog post about 7 years ago, and I'm happy to report that I rarely feel that way anymore. Here is a summary of the treatments that have worked best for my sons and I over the years - we now function fairly well and live active lives again: