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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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What Types of Fatigue Do I Experience Poll

What Types of Fatigue Do I Commonly Experience?

  • Post-exertional Malaise - Symptoms increase significantly after relatively mild amounts of exertion

    Votes: 623 84.4%
  • Brain Fog - I experience significant difficulty concentrating, speaking with ease, etc.

    Votes: 594 80.5%
  • Wired But Tired - Feelings of low energy along with a sense my system will not calm down

    Votes: 502 68.0%
  • Molasses Fatigue - Feelings of heaviness in the limbs are common

    Votes: 467 63.3%
  • Flu-like Fatigue - flu-like feelings accompanied with fatigue are common

    Votes: 474 64.2%

  • Total voters
    738
K

Knackered

Guest
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.
 

fingers2022

Senior Member
Messages
427
Great, Cort - can we build on this?

First, apologies for not having researched the whole site (it's getting too big and unstructured, but not complaining, it's still a great source and medium).

I'm interested in the subsets of CFS (OK, I give in, I'll use the term). I have swung between thinking it's a homogeneous condition back to thinking it's not.

I've got a picture in my head of a number of overlaping circles. Each circle represents a CFS subset, and the point where they all overlap in the middle is "fatigue". There may be other areas of overlap between two or more subsets, and this is where syptoms are common between the subsets concerned.

The challenge is to identify and define the subsets. There is the (can't remember who's) approach of identifying genotypes, but many have said they can't fit their symptoms to the subsets defined in this.

So, let's define the subsets based on symptoms. Does anyone know of anything that's been done with this so far?

If not, we need a means of collecting symptoms and observing the sets/clusters.

These are early thoughts, feedback most welcome.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
In addition to the two types of fatigue that I checked in the poll (post exertional exhaustion and cognitive dysfunction or "brain fog") I also get the never ending feeling of being short of breath, wanting to sigh or breathe deeply. I can fill my lungs with air just fine. It's just that my heart rate will not slow down so I keep feeling out of breath, as if I had just run up a flight of stairs. Yesterday morning my heart rate was 139 just standing still long enough to take my blood pressure. The blood pressure monitor measures heart rate as well as blood pressure so that's why I know the exact number. I feel much better after taking my meds and resting with my legs elevated gets it back down below 100.

I'm pretty sure this is all related to my orthostatic problems (NMH/POTS, positive result on the tilt table test in 1995). Still, I thought I'd add my comments to this thread (haven't read all the other replies yet, hope this is not a repeat). This type of "fatigue" (assuming that it fits in the category) is much more difficult for me to cope with than feeling weak (e.g., flu-like symptoms) or feeling sleepy. I never get those type of fatigue symptoms unless I'm actively fighting a virus with obvious cold/flu symptoms.
 

serenity

Senior Member
Messages
571
Location
Austin
the only one i feel i dont really have is brain fog. i can't explain why i dont' suffer from this as so many of you do. all of you seem so alert to me - but i'm sure it takes a lot to get it all written down in as comprehensive a way as you guys seem to.
the only time i feel fogged in the brain is if asked to make quick decisions, that i can't do. i must weigh every option & that takes time, even for the smallest thing. so yeh then i feel more stopped than fogged - i mean my brain literally quits. if pressured for a quick decision it just opts out.
i can't do math, read maps or deal with directions or street names - landmarks is the only way to get me where i need to go. need a GPS i guess :)
i figured these were personality traits not fog, but i learn all the time that things i thought were "just me" turn out to be part of this disease.
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
the only one i feel i dont really have is brain fog. i can't explain why i dont' suffer from this as so many of you do. all of you seem so alert to me - but i'm sure it takes a lot to get it all written down in as comprehensive a way as you guys seem to.
the only time i feel fogged in the brain is if asked to make quick decisions, that i can't do. i must weigh every option & that takes time, even for the smallest thing. so yeh then i feel more stopped than fogged - i mean my brain literally quits. if pressured for a quick decision it just opts out.
i can't do math, read maps or deal with directions or street names - landmarks is the only way to get me where i need to go. need a GPS i guess :)
i figured these were personality traits not fog, but i learn all the time that things i thought were "just me" turn out to be part of this disease.

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.
 

serenity

Senior Member
Messages
571
Location
Austin
i agree i do not chat well. you'll never see me in the chat room. i dont' like the phone, i am ok with one on one conversation tho because i do say "time out, what do you mean, let me think" - i'm very communicative & not scared to say whatever is in my little head. i dunno if my friends are just used to me being dingy? but i don't feel less intelligent than anyone else, i keep up very well. i agree driving is hard. that i dont' like.
i dont' feel fuzzy? maybe i act fuzzy & don't know it? haha! ;)
 
Messages
31
Location
Central California
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.
 

L'engle

moogle
Messages
3,197
Location
Canada
In addition to the two types of fatigue that I checked in the poll (post exertional exhaustion and cognitive dysfunction or "brain fog") I also get the never ending feeling of being short of breath, wanting to sigh or breathe deeply. I can fill my lungs with air just fine. It's just that my heart rate will not slow down so I keep feeling out of breath, as if I had just run up a flight of stairs. Yesterday morning my heart rate was 139 just standing still long enough to take my blood pressure. The blood pressure monitor measures heart rate as well as blood pressure so that's why I know the exact number. I feel much better after taking my meds and resting with my legs elevated gets it back down below 100.

I'm pretty sure this is all related to my orthostatic problems (NMH/POTS, positive result on the tilt table test in 1995). Still, I thought I'd add my comments to this thread (haven't read all the other replies yet, hope this is not a repeat). This type of "fatigue" (assuming that it fits in the category) is much more difficult for me to cope with than feeling weak (e.g., flu-like symptoms) or feeling sleepy. I never get those type of fatigue symptoms unless I'm actively fighting a virus with obvious cold/flu symptoms.

Marjorie

Marjorie, I also get this feeling of being always short of breath. I can feel the air getting to my lungs but it doesn't get to my head. Sometimes I can even go hiking and my legs are fine but my heart is thudding and I get a headache. Naturally this casues a big crash afterwards, sometimes for days. I can feel the blood vessels in the back of my neck straining to get the blood and oxygen up there. I get heart thudding from really small amounts of exertion. It prevents me from doing cardio exercises, even though I have basic good underlying fitness level. Treating OI is probably the best thing for this type of fatigue.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi

I used to get the molasses symptom but haven't had it much in the last decade. Otherwise I'd have all five fatigue types. I don't think we have only five types of fatigue though. I occassionally have the out of breath feeling, but I also get fatigue from hypoglycemia, food intolerances, etc. Each is different. I also only get the flu like feeling during relapses, wherease fifteen years ago it was 24/7.

Bye
Alex
 
Messages
7
I think if we do alright in one symptom, you do worse in another, its tit for tat, why do we have to put up with this crap!!!!
 

gregf

Senior Member
Messages
144
Location
Sydney Australia
No offense to Cort, but I never have anything to do with any research that uses the word fatigue.
I know those doctors are on the wrong track and I won't assist their research.

I say I do not have fatigue. I have an energy and oxygen problem.
It does cause all of those symptoms however, which change over time.