• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Which CFS Symptom Do You Hate the Most?

L'engle

moogle
Messages
3,187
Location
Canada
For me probably the headache that accompanies orthostatic intolerance and feels like a suffocation of the blood vessels leading to my head. Like an altitude sickness headache, I'd imagine. I hate this the most because it feels like if the back of my head is suffocated enough to hurt like that it is likely causing brain damage. It's not even such a sharp pain as a migraine but it is very heavy, and suffocating, sort of like there are lead bars up the back of the neck and into my head.

It's a toss-up between that and the deadened, flattened feeling of my brain, but I think the suffocation headache has probably caused that, over the long term.

Blech, going to read something more fun now!
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
Gee, with so many possibilities, it's hard to pick one. Mostly, it's whichever one is worst at the moment. The OI and flu-like PEM limit my activities the most. But if I have to choose the worst I guess it's the brain fog. It's the one that most affects my concept of myself, and makes me feel like I'm not ME anymore. Also, I think I could adjust to a mostly horizontal life without being so disabled, if only I could make my brain work. I've always been a "words" person, and I don't like being able to express myself, even to myself. I could still be a systems analyst if my brain worked. I could entertain myself by reading, learning new things, even watching movies, talk to friends on the phone. I could make a contribution to the world. Be creative. So if I could wave a wand and make just one symptom disappear, that's what I'd choose.
 

Nielk

Senior Member
Messages
6,970
By far the winner is:

Severe sinus/migraine like headaches that are constantly there. Sometimes it feels like a sledgehammer is doing overtime in my brain!

Losing my capability to function as a human being and watching how it effects my family comes in second.
 
Messages
28
The muscle pain, which causes sleep problems (hurts to sleep, hurts to stay awake), and migraines. And the tiredness/lack of energy soon as I wake. The way good days make me want to do things then I get cut down immediately and need to rest. Makes me feel like 80 some days.
 

jeffrez

Senior Member
Messages
1,112
Location
NY
Have to say it's a tie between the bodily fatigue and the brain fog/concentration/cognitive issues. Truly couldn't say which I would "trade" in exchange for not having the other, they both suck and are the worst part of the illness for me. I'd probably welcome the insomnia if I didn't have ME/CFS - get more done. :D
 

aimossy

Senior Member
Messages
1,106
OI,gut stuff, nerve sensations and nervousness, heavyness and fogginess cognition problems.
how everything fluctuates within the day/night.
this all makes you chronically uncomfortable with no sense of control over your body and completely stuffs up making plans and preforming tasks.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
For me probably the headache that accompanies orthostatic intolerance and feels like a suffocation of the blood vessels leading to my head. Like an altitude sickness headache, I'd imagine. I hate this the most because it feels like if the back of my head is suffocated enough to hurt like that it is likely causing brain damage. It's not even such a sharp pain as a migraine but it is very heavy, and suffocating, sort of like there are lead bars up the back of the neck and into my head.

It's a toss-up between that and the deadened, flattened feeling of my brain, but I think the suffocation headache has probably caused that, over the long term.

Ditto
 

PNR2008

Senior Member
Messages
613
Location
OH USA
I hate the pain in my legs, back and arms. I feel heavy like a big hand is holding me down in bed and I'm sinking backwards. There is the burning under the skin from FM in legs, shoulders and arms, numbness and tingling from neuropathy in my feet and hands, the rubber band stretching and constricting of RLS in legs and arms that allows no sleep, the sciatica that always comes with exercise and my personal favorite the pain that intense weakness brings from near syncope because of POTS. There is no hell, this is it.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
1. Nausea (thankfully rare now)
2. Polyuria, as it makes sleep difficult and also makes going out or having people round difficult and often embarrassing. Also very tiring having to keep getting up to go to loo.
3. Insomnia, as it makes me feel so run-down and generally ill. (Don't get this so much now either, thank goodness)