What do You think is your most disabling symptom?

[taniaaust1]

Im finding this thread fascinating as I never realised others here found their brain stuff to be so deabilitating as I do. (and if I got that word wrong its due tot the brain fog).

Its interesting too cause doctors tend to usually think our most probmatic symptom is our "physical fatigue" and not many of us are putting that here as a first thing

 

[PennyIA]

I have remitting/relapsing... so it depends on the flare up. Some have been SEVERE POTS (never got diagnosed as that, but totally was based on my memory of that horrid bed-bound three months). Some have been SEVERE pain. And when I'm not in PEM (which is horrid) during my remission-y periods, then it's the fatigue.

 

[cman89]

For me right now it's the migraine type stuff.I feel decent from the neck down except for gut but my head has throbbed off and on through the day since I got sick with Gastro in India last month. When im more lucid its ok mentally. ....In the past it was gut until that kinda went away. I had a damn good 2015 so this new setback is frustrating. No Pots but I do know I have dysautonomia of a sort....

 

[L'engle]

Cognitive stamina for me. If that was improved I could stand a chance of working part-time from home in bed, and just being 'myself' more hours of the day. Being physically housebound is annoying but the cognitive stuff is what takes the functioning out of most of the hours of the day.

 

[*GG*]

Cognitive (migraine / brain fog / memory) is my biggest issue as well.



An other problem is that I’m so easily distracted and randomly start googling words I read here on the forum (if I'm not sure about their meaning )

Oops, spell check works, just 1 extra S. LOL

GG

Edit: Don't have much of that flu feeling anymore or night sweats.

 

[actup]

I had daily flu symptoms (from 4-10 on scale of 10) for six years. My "7-10"days made me think a lot of using my scenic local bridge for a use for which it was not intended. The last five yrs(quit job and started on disability) the flu stuff has decreased in freq and severity by about half. Valtrex has been my go-to but am looking at more mitochondria friendly options w release of Nauviaux's research results.

The flu symptoms were worse than the fatigue. That's a bit like saying ( assuming St Peter is bending an ear) after being hit by a train and semi truck that the train hurt more. Oh, and did I mention the joint and muscle pain-that's the small plane that crashed into me at the train crossing.

 

[erin]

It's the fatigue for me, though palpitations are very scary too. Add blotedness and LS; life is hell...
But to be precise, number 1 is the fatigue.

 

[ryan31337]

Migraine is most disabling for me. OI/POTS flare up a close second. With these I can't simply 'push through' and accept the consequences of PEM, which would otherwise be possible (though dumb!).

 

[hixxy]

Total food sensitivity. I don't even tolerate the formula I'm tube fed.

 

[Glycon]

Brain fog. My other symptoms are pretty bad, but before I got too sick to go on with my career, I was in an extremely intellectually demanding academic field.

 

[Gingergrrl]

Shortness of breath/dyspnea especially when I attempt to stand up. Beyond 30-60 seconds I get chest pain and this keeps me in a wheelchair. If this went away, and I had the ability to inhale a full breath including while standing, I would be very close to having a completely normal life (as long as my mast cell disease did not return to it's initial presentation last summer when I had anaphylaxis to all food- then I'd be screwed again).

 

[DeGenesis]

Being punished for trying. PEM is so demoralizing.

 

[Dechi]

Being punished for trying. PEM is so demoralizing.

Not saying it would work for you, but Nimotop has helped with my symptoms, especially PEM. I don't have anymore long recovery periods after exercise since I've been taking it. Still not functioning properly while exercising, but at least I am not down for 3-5 days anymore !

 

[sb4]

Heart stuff, specifically pounding.

 

[Apple]

I'm finding the brainfog/mental exhaustion/constant grogginess the worst symptom over the last year or so. I've sort of unhappily accepted being disabled/using a wheelchair / being in pain etc. But to lie in bed all day not being able to do anything for hours at at time such as watching television or talking - just lying in a dark room with eye mask on & ear plugs in is just horrendous. Unable to sleep just having to lay there. I long to study. I long to read. I used to pass the time watching films or constantly browsing the internet. Currently watching tv is an achievement. Really, really sucks.

Insomnia/unrefreshing sleep, bladder problems, digestive problems and PEM come a close second.

I hate this disease.

 

[Sidney]

Depends which part of the wave pattern I'm in: on the crest,= "good", days, it's Fatigue ( totally inadequate word - what word would include knockout flu etc.?)

In the troughs of the wave, add inability to stand without collapse, hypersensitivity to everything ( temperature, touch, sound light...), including mental distractions, like books etc that I would normally enjoy.

The foggy brain goes up and down alongside.

Insomnia is permanent: in PEM crashes becomes a new torment. However, for me, the

Fatigue/flu underlies them all.

 

[TreePerson]

Muscle fatigue. Overwhelming ridiculous can't lift an arm, nothing there, no energy, emptiness all through body, weakness all over, just lie flat and try to focus on breath because that's all there is type muscle fatigue. I could cope with a flu type symptoms or pain that comes with it if my body worked.

 

[Jessie~]

Cognitive, Fatigue/Stamina, and PEM. These are constants that limit everything every day.

I can deal better with all of the different types and locations of Pain as long as it fluctuates and there is occasional relief.

 

[worldbackwards]

Being freezing cold all the time, except when I'm red hot. Interrupts my sleep, impacts on other activities and makes them far more difficult that they would otherwise be. It's like the ringmaster that conducts the three ring circus. I'm firmly of the opinion that if it would just bugger off I'd probably get better more or less.

 

[Navid]

Unrefreshing sleep...wake many many times throughout the night and then with a huge adrenal/cortisol rush around 5am. Feel nauseous and weak at that time. rest of day is debilitating fatigue....no energy to do anything.