Is your worst fatigue in the morning too?

[Blazer95]

I feel usually quite good in the morning until i am really "awake". Then the Symptoms usually get worse progressively.

I usually feel Most horrid between 10-15 o clock and then after 15:00 i start Feeling better again.

 

[Rootoo]

My energy is definitely better in the morning, even after a night of particularly unrefreshing sleep.

I experience peaks and troughs throughout the day. However, I don’t use wearables and I’m not very self-aware in terms of monitoring myself.

I think that I should keep a diary to see if I can identify any patterns that might help me to pace better.

 

[Wishful]

I think that I should keep a diary to see if I can identify any patterns that might help me to pace better.

My food/activity/symptoms journal has been very useful for identifying problem foods and activities, and several things that helped me (once I figured out what was helping). Human memory is too infallible for this task.

My journal has led me to discover some real surprises "<That> makes me feel worse???" "<That activity> gives me insomnia 12 hrs later?? Eating an egg counteracts that insomnia trigger???"

 

[Rootoo]

Thank you for that insight, Wishful.

I can spot things that are glaringly obvious, such as someone operating a pressure washer outside when listening to music full blast.

However, it hadn’t occurred to me to go smaller and look for the nuances.

I’ll give your suggestion a go. Do you use anything specific, or just a daily journal with extra space for notes?

 

[Dysfunkion]

I also have a journal personally (not the one on here, though I should update that now and then) and when I find a connection between a couple things I didn't notice before I log it down.

 

[Violeta]

Is this actually a symptom of myalgic encephalomyelitis?

 

[Wishful]

Do you use anything specific, or just a daily journal with extra space for notes?

Nothing specific, just paper to write stuff down on. My initial notes were on random small pieces of paper; then I moved to old computer printout paper, which is held on a clipboard. Sadly, this results in the pages getting quite dirty, so it's really not the easiest system for looking back over records. Also, I used shorthand that made sense at the time, but now is a mystery. However, if I made the system too complex and thus inconvenient, I wouldn't use it. So, figure out what works for you.

 

[Violeta]

Is this actually a symptom of myalgic encephalomyelitis?

The name “myalgic encephalomyelitis” essentially means “muscle pain related to central nervous system inflammation” and many efforts to find diagnostic biomarkers have focused on one or more aspects of neuroinflammation, from periphery to brain.

Neuroinflammation and Cytokines in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Critical Review of Research Methods​

Michael B. VanElzakker,* Sydney A. Brumfield, and Paula S. Lara Mejia

https://www.ncbi.nlm.nih.gov/pmc/ar...ly,neuroinflammation, from periphery to brain.

 

[Wishful]

I thought about my "hard to look stuff up in" record keeping on old computer paper, and while I was at a dollar store, I picked up a cheap notebook with lined paper, and covers to keep the dust/spills/etc off. I should have done that years ago.

 

[Rhonda]

I’ve been dealing with a variety of ME/CFS symptoms for nine months and was recently diagnosed with it after extensive testing.

my fatigue is worst in the morning. I wake up and feel dead and force myself to get up. I’m faded physically and mentally before I even get out of bed so this doesn’t just happen when I stand up.

I tend to get some energy by 12:30pm. By 8pm I crash again. And my fatigue comes and goes in between.

I’d say at my worst I’m like a battery with 5% charged and at my best I reach 50%.

Do any of you have fatigue patterns like this where it’s always the worst at certain points in the day?

Takes me hours to get through the morning hell of ME, and then I’m only good for a couple of hours, assuming I even get that far. After 22 yrs sick, this last year I gave up trying to get dressed everyday, even if it took me all day. I also will go weeks w/o leaving my house. I still try very hard to do something each day, but most days I do little more than reading for a couple of hours or writing online (as a retired professor, I’m lost if I can’t do either of those at least a little bit).

I’ve always pushed too hard, a lifetime of habit, survival strategy I just can’t break - insecurity driven I’m sure (and yeah, a really powerful work ethic) - but it always down to mind over body (w/help of prescriptions - stimulants & pains meds - that most ppl wouldn’t take but I do bc if I can’t take care of myself, there is no one else) which can be self-destructive enough, & w/ME is probably a death wish. Full disclosure - I’ve had severe but high functioning PTSD, probably since I was five (I’m 63 now), repeatedly treated & them retriggered; the PTSD is managed w/therapy, but I have to admit, if I didn’t compartmentalize & disassociate to some degree, I don’t know if I could have survived this damn disease this long on my own. It’s not a great system, and I don’t recommend it; it’s no doubt why I’ve continued to worsen over the last 23 yrs, but at this point, it’s probably the only way I can keep myself from giving up - the pain is unbearable, the exhaustion is worse than ever, and the growing list of ME symptoms is getting overwhelming (plus aging which has it own nasty changes to deal with).

As my condition has worsened, I’ve struggled with a form of narcolepsy whenever I become exhausted. Once reason I don’t rush the waking up process, if I’m moving around too soon, I will suddenly drop off to sleep, even when standing. At night, the narcolepsy acts like “last call”; I have to hurry and get it bedtime ritual complete before I start dropping off. It’s such a horrible feeling, dropping off into blackness, then being pulled up again suddenly - I feel like a yo-yo, and it is accompanied by a really horrible all around tub of a feeling.

So yeah, exhaustion (I refuse to call fatigue - I’ve been fatigued all my life, this isn’t fatigue - this is the more horrible, poison running though my body, can I die now, feeling)

Isn’t it weird to have all these symptoms with out a vocabulary to accurately and fully describe them. I guess I could learn Latin. Maybe that would help. But I don’t know any words to describe the experience of exhaustion of ME, nor any of the other symptoms. Maybe we need a language of our own, w/words that we share the meaning of. I just read last night that the US government CDC has updated their estimate of how many Americans have been diagnosed with ME (so not counting all those ppl who are being told they are just mentally ill, not sick?: 3.3 million people, that’s over I out of every 100 people. This is a much higher rate of illness than most other well known neurological illnesses - including MS (>1 million) and Parkinson’s (1 million). Yet the idea that we all suffer some kind of collective hysteria continues to prevail (I don’t know about you all, but I knew nothing about ME or CFS, except that it was the butt if jokes on late-night TV)

 

[Wishful]

Isn’t it weird to have all these symptoms with out a vocabulary to accurately and fully describe them.

I've asked before whether to any other language has words that describe ME symptoms. No response yet. Language just isn't very good at communicating personal experiences. Hmmm, poetry? There's a challenge for someone: write a poem that effectively communicates how lousy we feel.

 

[Wishful]

that’s over I out of every 100 people.

I really find it hard to accept that in my small town (30K), 300 people are feeling this lousy every day, maybe unable to work, and some unable to get out of bed, ... and the government can't bother to fund research into this horrible disease.