What Types of Fatigue Do I Experience Poll

[Glycon]

Third this! Kind of glad to hear it really. But only because on occasion, which I've told various doctors this, they've decided I couldn't possibly have CFS/ME/FMS because they'd never seen anyone with the condition who didn't also have brain-fog. Which has led to endless hours of lying in bed wondering if maybe I do have it but am just not aware of it. So I asked the hub and he said 'No. Groaning, huffing, puffing, weeping, wincing, canceling things, suddenly having to lie down, pacing the floors at 4am, fits of anger against the world yes, but nothing noticeably different in the brain department.' Maybe it's one of the symptoms I have to look forward to. Yippee.

Do you have orthostatic intolerance? If you don't (or if it is relativelty light), you could have built in resilience against brain fog as well.

 

[Bettie77]

I checked all five of this list, but flu-like fatigue and brainfog are the worst.

The 'flu' is constant now for months, since I still haven't found the balance between activity and rest.

The brainfog is sometimes scary. I was a member of Mensa, but now I have trouble with reading even a simple wheather forecast, or do some simple adding and subtracting sums. The brainfog after the bike-test was so severe, I couldn't even understand a frase like "Would you like a cup of tea?". I really scared my hubby with that...

I don't feel like molasses, but more like a 'rubber chicken'. My limbs are not so heavy, but I can't make them do exactly what I want. Like being very, very drunk. When walking my knees and feet go all over the place. When I want to scratch my nose, I end up poking my eye.

And sometimes, when I'm really forcing myself well beyond my limits, I don't feel the 'tired' when 'wired'. I'm like a robot, I'm on autopilot and I don't feel fatigue. Or hunger, or cold, or pain for that matter. But for anyone around me it's very clear I'm exhausted and about to crash. To me that crash comes as a surprise, something like a sudden "System shutdown in 10, 9, 8, ..."

 

[Rufous McKinney]

Flu-like Fatigue and brain fog are my worst two. I have an all over flu-like body feeling which leaves me feeling dreadful on a daily basis, doing anything physical or mental leaves me feeling worse.

My illness is like always having the flu, 24/7 with joint & muscle pains, brain fog, nausea and lymph node swelling thrown in.

It feels like I've ran a marathon with the flu.

 

[Rufous McKinney]

Its like the flu 24/7. Mine cycles across the 24 hour period, and corresponds to severe Yin Deficiency in Chinese Traditional Medicine, which does help me with acute symptoms when I am on those herbs. So every nite its VERY bad because the Yin is drained away and is supposed to rebuild in the nite while sleeping. Western medicine might say the Adrenals are exhausted.

My brainstem is squeezed. It radiates from there. From there: everything above is OVERHEATED (the Yin is not cooling down the Yang), inflamed and in pain. So the brain feels squeezed and the more squeezed the more fog and pain. Occasionally, the fog lifts and I know my smart brain is still actually in there someplace.

I then also have extreme anxiety, another brain squeeze if you ask me. And so the deep sleep cycle where body repair happens is somehow impaired, so repairs aren't happening or are limited and not adequate. I can attest that when your deep sleep cycle is messed up, your insulin can be very messed up. And when insomnia happens, the brain is FEEDING on the limited energy. The brain is a HUGE CALORIC consumer. So this is messing with blood sugar. Also feeding anxiety.

Thanks so much for being here: its really helping to just feel not so alone.

 

[Rufous McKinney]

Marjorie and others: I call it an ANVIL is sitting on my chest. Its so hard to breathe. during acute episodes.

I got the norovirus/ felt like on my death bed went to the ER: I could so barely breathe..I considered asking for oxygen.

 

[Rufous McKinney]

The brainfog is the most distressing for me, & also the most persistent; I only get a handful of days out of a YEAR where I feel mentally clear (and I am very envious of normal people; they have NO IDEA how lucky they are). My brain does that 'shut-down' thing too, which is obviously embarassing in social situations, and eats up time like a voracious monster. It's like constantly having to restart an engine (and then the engine won't let me get past second gear, and the trannie is slipping...). Especially in a world where the ability to multitask is a badge of honor, & often a necessity in the workplace, brainfog stinks to high Heaven. As another poster said: it's my holy grail. My next most frequent symptom is the Wired/Tired (and it was part of me long before I started w/ caffeine). Can a person get 'dependent' on their own adrenaline? I have tried many things to control it: thoughts (can't I just DECIDE not to be anxious?), meditation (can't stay awake), stretching and aerobic exercise (rode my bike to & from work, Mon/Wed/Fri, 5 miles each direction, from spring to fall: NOTHING improved except my aerobic stamina, & everything else -ESPECIALLY the brainfog- got worse. I'd heard that being in shape aerobically was a good treatment for brainfog, and I was determined to rid myself of the BF. My disappointment was exponential. I was distinctly overwhelmed with zombie-brain [desire to sit & stare off into space] and INTENSE sleepiness after each ride). I often get adrenaline gushing when in bed at night, and oddly, I find I go to sleep faster if I don't try to fight it, just let the heart race, etc. Weird.


Next most frequent is the molasses: misery, esp. when I've got much work to do. It often goes along with the times where I feel too tired to even sit up, and at it's worst (maybe 5-10 days a month) I lie down, feeling too tired to BREATHE. Not asthma, just a sense of being almost paralyzed. I am dreading a day when I have a family emergency during one of those episodes; it truly terrifies me.
And, that FLU feeling: gads! I have two forms of it: one where it is combined with the pseudo-paralysis feeling (ALL I can do is lay there and suffer like a sick animal in the wild. I shove my face into my pillow as hard as I can, cuz my sinuses are throbbing, w/ no fever); and the other form, where I lie there and writhe in pain, having almost a compulsion to move and twitch. If I have the energy to keep writhing and stretching EVERY which way for 2-3 hours solid, the pains go away and I'm completely exhausted.
Before I heard about these diseases, I thought I was crazy. I must wonder how many people commit suicide due to 'CFS'/ME/FMS/etc; I'm afraid that if I had not found out that I wasn't the only one like this, I might have off'd myself long ago. These symptoms, in combination with having to keep the suffering all to yourself b'cuz no one believes you (and the humiliation dished out by doctors): recipe for disaster. My heart breaks for people who are not aware that this is not their fault, nor their imagination. I'm scared there's a lot of those poor souls in the world.

To: Tymewarp: I am your twin! You are not alone! Surfing adrenaline at nite. Writhing on the bed never able to nap yet never waking up either. I "sleep" 11 hours (I have had to Xanax myself in order for that to happen) and then stand up and realize I won't wake up today, really., again. Sometimes I can will myself to brain engage in some distraction; but that is so exhausting. In the last three years, my brain might wake up and be not fogged: one day per month maybe. Two days in a row? NOPE.

Recently I realized I had been insulted by the dental surgeon. I was descriibing that I am not likely a candidate for dental implants, as my mouth,lips, gums,pallette, tongue, sinus all swell up: my teeth are being pushed out of my mouth. Dentist: doesn't believe me. This was so insulting I do not want to go back.

 

[Rufous McKinney]

I think "brain fog" doesn't even begin to describe it. Sometimes it feels like my brain is swollen and things are fuzzy. Oftentimes it's more like you describe, danib, like a traffic jam in my head roadblocks, detours, dead-ends and it takes a long time to connect one dot to the next, so long that I often have no idea what dot I was heading towards. Or my brain gets an error message and shuts itself down. I've learned ways to compensate for some of these problems when I'm home by myself, but going out into the "real" world, where things move faster (especially while driving), is a difficult and scary thing. It's not a good idea to stop in the middle of the freeway to gather ones thoughts, nor does it work in a real-time conversation to call a time-out while one tries to process what's just been said. This forum works for me because I can take my time and can rewrite and edit and delete. Chat is more difficult.

I have great difficulty driving more than about 1/2 an hour and the Freeway is out of the question. The brain: hurts. Trying to think THRU the fog and molasses layer. It hurts to think. I've been "offline" much of the time for months now. Not listening to the chatter on the TV or radio. Not reading the article. Not learning my Spanish. There is all this pressure in the brain/it is squeezed and boiling over with heat/inflammation...I know 100%.

My life is called: Escape Planning. I cannot plan fun things. I plan: how will I escape from the demands the world puts on me. I just retired: thats my sole salvation at the moment.

 

[keepontruckin]

Question about post exertional fatigue.
I hear so many cfs people say that their pains & fatigue occur not immediately afterwards but perhaps the next day.

Is it also typical for cfs patients to feel fatigue immediately after exertion but not the day after?

 

[Heartl]

Question about post exertional fatigue.
I hear so many cfs people say that their pains & fatigue occur not immediately afterwards but perhaps the next day.

Is it also typical for cfs patients to feel fatigue immediately after exertion but not the day after?

I have never experienced that. If I feel well enough for an activity it always gets me the next day and even days after.

 

[keepontruckin]

Thanks for your reply. I would be interested in hearing from others as well. Do you have to have that delayed reaction of exertional fatigue to have cfs or can you just be exhausted immediately after until your recover?

 

[Wolfcub]

I can go for a walk and feel....not too bad! The walk even seems to be doing me good.
I am lucky to be able to do that, I know. I like to be outside. It reminds me of my "real self" and to be in Nature and out in the air, etc.
I might not feel too bad that evening. I might think it's "over" That I might be coming back to myself again slowly(!)
Next day I might go for even another walk and that does me no harm either, and I enjoy it.
It's often 2-3 days later that I pay.
Live now, pay later. I ought to get a T shirt with that printed on it to remind me....

 

[keepontruckin]

I suppose it is possible that some people may not notice that the exercise they did two days earlier was connected with them having a bad day.
Does anyone know if an immediate heavy fatigue can be cfs as well - a fatigue that healthy people do not get. Other symptoms include mcs, food sensitivities, pain of one kind or another always, no stamina.
I will investigate further if it is possible she has not noticed a delayed reaction a couple of days later.

 

[Sidney]

I can go for a walk and feel....not too bad! The walk even seems to be doing me good.
I am lucky to be able to do that, I know. I like to be outside. It reminds me of my "real self" and to be in Nature and out in the air, etc.
I might not feel too bad that evening. I might think it's "over" That I might be coming back to myself again slowly(!)
Next day I might go for even another walk and that does me no harm either, and I enjoy it.
It's often 2-3 days later that I pay.
Live now, pay later. I ought to get a T shirt with that printed on it to remind me....

I need that t-shirt ( or perhaps a tattoo)!
Almost exactly my experience, @Wolfcub: one very short, beautiful walk, feels so healthful, so happy, and I am so grateful- thinking that I’m going into a “good” spell ; then, sometimes 24, sometimes 48, hours (often to the exact hour) later, I enter a ghastly phase for at least a week. Why oh why oh why haven’t I learnt?? It felt so wonderful...

 

[Hufsamor]

Thanks for your reply. I would be interested in hearing from others as well. Do you have to have that delayed reaction of exertional fatigue to have cfs or can you just be exhausted immediately after until your recover?

I do both.
For years, I thought I couldn't have me/CFs, because I just got crashes with no link to my activity. Or so I thought. First when I learned about the 2-3 days delay, I began so see the pattern.

I'm now sicker than before. Some days, to go to the kitchen gives me cramps and exhaustion on my way. Other periods I'm better and might go to the playing ground with my grandchild, not paying until 2 days later.

Before, I could even push for maybe 3 months before the big crash.

(Like when my mother got really sick and needed help.
I went to see her every day, happy that her sickness happened at the same time as I had a good period.
I was looking after myself, not pushing too hard (I thought) , resting a lot, doing mindfulness and relaxation exercises.
But after 3 months I had a huge crash.
(At that time my mother was much better, so I was thankful anyway, that I had the possibility to push when it was needed))

Looking back, 3 months are also a pattern. I got a bit better, worked more, new crash.

So for myself, I have

Immediately crash
48 hours crash
3 months crash

 

[Blasted]

I can go for a walk and feel....not too bad! The walk even seems to be doing me good.
I might not feel too bad that evening. I might think it's "over" That I might be coming back to myself again slowly(!)
Next day I might go for even another walk and that does me no harm either, and I enjoy it.
It's often 2-3 days later that I pay.
Live now, pay later. I ought to get a T shirt with that printed on it to remind me....

This is a great description Wolfcub. It's very hard not to overdo it when there is rarely a signal that says 'ok you're on verge of triggering a flare up'. One might reason well maybe if my body gives no signal then I will use a pedometer and track how much I've walked. The problem with that is there are many other variables (how's my conditioning, when was the last time I ate, how much activity did I do the day before and how much activity will I do tomorrow). All these factors and dozens more that we have no idea about can presumably affect wether or not a particular activity will trigger a flare up so it's hard to gauge.

 

[lenora]

Hello Everyone. @Wolfcub, do you know approximately how much you're walking. That can make a big difference to how we feel the next day, yet I also know that you love to walk (as did I) and it's important to stretch our muscles as much as possible.

It's tough and I even find that some months are better than others. I can't walk here during the summer b/c of the head, although our alleys do provide some protection from the sun's rays. Winter's great, and I miss getting out and returning feeling refreshed and with rosy cheeks, seeing others, (I like people) and their dogs, too. I haven't been able to make that goal for a few years now, but I do exercises and then walk around our house. I'll do it in small amounts, if necessary. Such as putting a cup of tea in the microwave and setting it for 3 minutes (herbal tea). Then really walk for that length of time...is it the best? No, but then it's better than nothing. If I do that a few times/day I'm doing a minimum of 15 minutes. Yesterday, I only did it once b/c I just wasn't feeling up to it and could tell that I wasn't well. Today's better. I think we each have gauge ourselves....no certain answers for any of it. Yours, Lenora.

 

[Pyrrhus]

This poll option is also known as the "sickness response":

Flu-like Fatigue - flu-like feelings accompanied with fatigue are common

This "sickness response" (which used to be called "sickness behavior") refers to "flu-like" symptoms that you normally would get with an acute infection, such as feeling feverish, unusual body aches, or alternating chills/sweating.

For me, this "sickness response" was an almost weekly event in the first few years of my ME, but it then faded. I haven't experienced any sickness response in over 10 years.

Michael vanElzakker often talks about the sickness response and its connection to the vagus nerve.

 

[Quest11]

Am I the only one who has them all 😅

 

[Jyoti]

No, @Quest11, sadly, you are in good and copious company!