What are your worst symptoms?

[Vickytoria1988]

Hi all!!!

What are your most debilitating symptoms? I remember I could work full time with extreme fatigue but with headaches (brain inflammation to my opinion) I am useless.

I try to understand the nature of this illness and how it works in each of us, we are all different.

I will be happy to hear your description

 

[Manganus]

Hard to tell, since one adapts to lots of symptoms.

One adaption is that I don't try to take walks longer than to the nearest store - and for the time being, no more than twice or thrice a week. I have the ocean at just a kilometer's distance (or, maybe a mile's). I miss the walks there, but I can't really say it's my worst symptom.

No, the worst symptom is the mental exhaustion, that makes it hard to read and comprehend what I'm reading, and equally hard to follow a conversation.

 

[TiredSam]

Headaches. Exhaustion.

 

[Valentijn]

PEM is the most disabling for me, but cognitive dysfunction is the most annoying. Crashes and disability would be easier to take if I could consistently read, think, and write like I did before I got sick.

 

[wonderoushope]

PEM (which also means it's hard to concentrate for me) nausea (starting to nut out what food an supplements cause nausea at least) and food sensitivities.

Also some weeks I get debilitating hunger which does not switch off and I can eat as much protein, fat, carbs and it makes no difference (every half an hour I become hungry again). That is horrible too, because I can't concentrate on anything but the hunger sensation and trying to get rid of it. My dietitian think it's something to do with hormones.

 

[Thinktank]

Cognitive dysfunction and orthostatic intolerance are the most disabling for me. I could live with all the other symptoms....

 

[Apple]

Unrefreshing sleep combined with insomnia.
Brain exhaustion - I used to pass the time watching movies and boxsets. Now I can only watch 20 mins or so. And even that makes me feel unwell.
Nausea. Nausea when I eat. Nausea when I don't eat.

 

[belize44]

PEM and pain, mostly. It is aggravating to crash the following day because I climbed a set of stairs once! Pain ebbs and flows so that sometimes I can ignore it, but at other times it is severe. Cognitive disruption also comes and goes; I hate it when I think I have balanced my checkbook and I haven't.

 

[Jay Dezi]

The cognitive dysfunction is the most frustrating for me, I love learning and challenging my brain and I'd feel a lot better about having to spend all my time in bed if I could be learning new skills and taking courses. The pain though can get to me every once in a while. I have constant nerve pain, like a tingling sensation and sometimes it's all that I can think about. It makes me feel like I can never relax. Having weird gaps in my memory is disturbing but didn't bother me as much as I expected it to. The rest of my symptoms don't really bother me too much and now that I have my sleep figured out things are much better

 

[herpesbaby]

Low grade fever that gives a headache. Exhaustion. Drooping eyelids.

 

[Insomniac]

exhaustion and PEM

 

[Silence]

1.Chronic diarrhea/malabsorption, food intolerancbes
2.Brain inflammation- brain zaps, confusion, migraines, ear-ringing/hissing/wooshing/hearing going out, feeling drugged/drunk, feeling like somebody is pushing me down, lactic acid burn in brain, pounding pressure in head. Anxiety/panic
3. Post exertional Malaise.
4.Feeling of unable to breathe.

 

[Dechi]

Dizziness and brain fog. Muscle weakness. Not sleeping is also a big problem. It comes in phases.

 

[Wishful]

Brainfog, or mental lethargy if that's considered different. I can do physical activities if I want to, but the mental lethargy makes me not want to do anything.

 

[Alvin2]

All of them.
I've had this long enough to have everything get bad

 

[Mij]

I don't get PEM anymore because I stay within my limits, but that is the worst when it happens.

What keeps me disabled is OI (needing to lie down frequently) and rapid loss of stamina both mentally and physically. So going out only for short periods without taking a shower that day- nice. I have to plan in advance and time everything I do.

Then of course the frequent viral symptoms of dizziness.

 

[ash0787]

depends because I have phases but in a sustained crash what tend to happen which I hate is what I call energy level bottoming out where I lose a lot of motivation and ability to concentrate, I feel like doing any substantial activity like watching a film is trying to use something which I can't spare so I just sit there doing nothing for half the time, sometimes this alternatively manifests as needing to sleep every few hours though

The other thing I find really annoying is when there is a disconnection from the surrounding environment and general
memory recall reluctance / confusion

Its not really one thing in particular its like 10 or 15 different things which can possibly arise with varying intensity.
The near constant feelings of aches and tiredness / physical unease I am able to completely mentally filter out though.

 

[arewenearlythereyet]

Worst:
PEM/ staying within my limits physically
Cognitive dysfunction (concentration, short term memory, brain fog, bloody mood swings )
Sound and light sensitivity

Can live with:
Alternating constipation and dihorrea
Joint and muscle pain
OI ( mine is pretty constant but mild)
Nausea
Headaches