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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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Fatigue isnt that bad at all, anybody else?

bensmith

Senior Member
Messages
1,547
Minor fatigue unless i push really hard and crash all day. But bed ridden. Anybody else not have bad fatigue?

normal?
 

BrightCandle

Senior Member
Messages
1,147
What is making you bedridden if not fatigue and post-exertion malaise? My worst symptom is definitely the headaches and they tended to stop me getting to the severe PEM stage for quite a while until I got quite severe. But I definitely have PEM now.
 

bensmith

Senior Member
Messages
1,547
@BrightCandle pem is new symptoms, but main is extreme emotional distress/suicide/“brain pain”

if i walked to kitchen for example my world would explode. Not very fatigued though. I only had minor fatigue come after world crashing pem, for weeks or a montj. Even then not bad at all. Minor even.

all kinds other issues. Sound light memory brain pain suice muscle nerve joint spine. Just weird i dont jace fatigue. I wish i did i cant sleep not tired at all in the day. Seconds never tick by.

well actually i wish i was well or had the strength to do what was necessary, either.
 

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
So you probably have more brain inflammation than many here. Or so my brain wants to think.

Definitely if I walk to the kitchen, my brain screams SIT DOWN OR ILL DO IT FOR YOU

Definitely do read histories of others here, and make a list of those that match your symptoms. We are all quite the hodgepodge here, but follow those that seem like your twin. I really don’t know much of your background, but my brain wants to say I’ve seen similar stories. Me? I’m a very long slow downward spiral over decades. Don’t follow me, but never give up! You are young, you have more potential for turning this around than I have.

Best of luck and keep that hope in your head.
 

xebex

Senior Member
Messages
840
Fatigue isn’t my main symptom either. Mine is muscle weakness/fatigue in my back and spine pain to the point I feel I can’t hold Myself up anymore which seems to cause pressure to build up in my eyes, face and the back of my head then neurological issues like word finding, and extreme sleepiness then I get rage episodes. The next day or two I’ll feel like I have the flu and it will take me around 2 weeks to get my muscles stamina back and be able to stand for a baseline of 30minutes. On a bad day I can’t stand up for more than 2 minutes. But I don’t have POTs. It seems to me I loose function in my brain and back muscles after very minimal time being upright, but my legs can keep on going longer, which is bizarre, sometimes I feel like my legs are normal and carrying round a semi zombie upper half. If I rest properly and spend all day lying on the sofa and keep my diet in check I am symptomless unless upright (including sitting)
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
With all the symptoms of this disease/disorder and how they overlay over each other I don’t even know what the specific symptom of fatigue is anymore?

My brain just cannot muster the energy to function and do anything meaningful right now, it’s completely wasted and cannot function more than staring at TV bedridden and doing basic phone stuff, doing anything cognitively challenging other than TV and using phone tires my brain so much, and my muscles hurt and ache all over like the flu that I don’t want to walk more than a few steps. Is that fatigue? Or just brain fatigue?
 

godlovesatrier

Senior Member
Messages
2,545
Location
United Kingdom
Fatigue isn't tiredness if you ask me. But I agree the definition is sadly not that specific.

Dictionary says "Extreme tiredness resulting from physical exertion or illness."

I describe fatigue as the extreme cellular exhaustion in muscle tissue that you get when you have gastroenteritis or any type of flu virus.

So after taking andrographis paniculata on and off for about 3 years most of my fatigue has gone and only comes back if i over do it without PEM buffers like BCAA's/Reishi or if I am sick with a stomach bug or the flu. Also if a crash is severe enough (which I more or less never allow it to be) the fatigue can become severe too. I should say that I believe andro dramatically lowered my brain inflammation as well, which I suspect has made fatigue control far easier. But I am up and down like a yoyo. From March to July I felt rough and weak as anything. From July to Sept I recovered from glandular fever. For 4 weeks from Oct to Nov I felt pretty terrific, I was taking BCAA's and a multi vitamin but I felt really good. If it wasn't for the flu jab I would still be feeling great. I don't know why I spent most of the year feeling horrendous pre glandular fever, but I did.

For me it's the feeling when you lift a limb off the bed and within a few seconds you can feel the cellular strength drain - your cells become exhausted in seconds. For me that's when I know it's fatigue.

I would say tiredness for me is when I fall asleep a lot or actively nod off in the day.