Warning signs and flares

[Emmarose47]

Hi
I'd like to hear what it's like for others ..
What are your signs around ' ok rest , slow down ?
I get pain in my forearms and feet ..
It's like a deep ache in my bones and my feet start tingling and aching .
I always get left lymph node swell and left ear ache ( which is interesting because I've had this symptom for years and years pre CFS ...
Bit of light sensitivity and headache .
My energy starts to go and I know it's time to rest up ...

Also What are your symptoms when in a flare ? .

 

[xebex]

When I start to get warning signs I know it’s too late already. I have to stop before the signs appear which is super frustrating. But I know I’ve done too much when the muscles in my upper back start to seize up, I start to get sleepy, and irritable, confused, weak, lose words, breathless. I will then fall into a coma sleep - like a state of waking unconsciousness. If I can sleep it will be fitfull with myclonic jerks and air hunger. The next day I will wake up with a toxic brain feeling, weakness, breathless and flu like symptoms. If I let it get this far it’ll take well over a week to recover but that’s good because it used to take 2 months!

I forgot to mention the worst symptom of all lol, the longer I am upright the more face, sinus and back of head pressure I get.

 

[Emmarose47]

Thanks for sharing xebex
I think I might be going into a flare right now ...but will see

 

[Rufous McKinney]

When I start to get warning signs I know it’s too late already. I have to stop before the signs appear which is super frustrating. But I know I’ve done too much when the muscles in my upper back start to seize up, I start to get sleepy, and irritable, confused, weak, lose words, breathless. I will then fall into a coma sleep - like a state of waking unconsciousness. If I can sleep it will be fit full with myclonic jerks and air hunger. The next day I will wake up with a toxic brain feeling, weakness, breathless and flu like symptoms. If I let it get this far it’ll take well over a week to recover but that’s good because it used to take 2 months!

VERY similar here.

PEM quality varies between physical and mental/emo crashes.

and I started to describe how they vary, but I got too tired thinking about it.

I'm having issues figuring out whether mental crashes are happening due to a physical reason like: I'm lying down and maybe CCI is at play; I'm sitting up at the table too long and CCI may be at play.

I now notice things like my Gut has crashed and its mush. Different from inflammed or leaking.

 

[Rufous McKinney]

I think I might be going into a flare right now ...but will see

I'm now pulling out of the PEM crash that started Monday at 2 pm (late arrival time).

So: today is better.

so: what do I get to do? the tiny things I did on Sunday led to three days of a pretty lousy crash. So shall I just repeat and: be sick for three more?

My husbands' friend is coming over who-is willing to chat and is actually interesting. do I dare go outside and visit a bit?

People exist to "do" things. Some do just "exist" to "exist". So what are we supposed to "do" now?

 

[blueberry]

Sore throat = stop. Swollen glands= too late, should have stopped at sore throat! Tingly tongue= overdone it but not feeling it 'cos running on adrenaline and you're going to pay for it! Everything ache= overdone it plus it's an overcast day and/or raining, so stay in bed if you can. I live on the edge of PEM all the time, because I work at the very edges of my energy envelope, due to my circumstances of being sick but also being the sole earner in my household, so I'm very familiar with my warning signs. This is a really good idea for a thread.

 

[Rufous McKinney]

Sore throat = stop.

sometimes this symptoms is So BAD and I wasn't talking and I have misread it as: I must be getting sick with a cold. Then in the morning when I get up it doesn't hurt any more. it cycles daily.

 

[Judee]

I also get very, very cold.

This is a really good idea for a thread.

I agree with that.

 

[Rufous McKinney]

What are your signs around ' ok rest , slow down ?

Its my eyes, actually. They report in daily, first thing. Conditions vary tremendously, but is the first sign of PEM that - I sleep one whole hour later than normal, and my eyes, the window to my soul: report on conditions directly.

 

[Revel]

My first warning sign is a feeling of running on empty, beyond the norm, and I become aware that I'm likely borrowing energy from tomorrow to get me through today. Plus nausea as my GI system slows down. I usually have a low humming noise in my head that increases in volume to match the intensity of the PEM episode looming.

The noise sounds like an old dial-up modem, as though my brain is attempting to signal to my body to cease activity and rest. Perhaps my grey matter should try a more modern form of technology to get through?

If I wake with a sore throat/swollen glands it means PEM has already arrived.

 

[Emmarose47]

Thanks for replies so far ... I think it really helps us feel not so alone with this damn thing ..
I started flare up last nite . Today on bed , pain , ache exhaustion ...you know the usual ..
Merry go round central ...
Maybe one day the merry go round will stop.