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why is my PEM so odd

Aerose91

Senior Member
Messages
1,398
Anytime I overexert it doesn't hit me until I'm sleeping. Then, I will be woken up and I'm absolutely red lining. Nerve pain all over, heart beating hard, trouble breathing because my lungs feel tight, tinnitus louder, increased cognitive difficulties. I'll just be totally buzzing. I'm still extremely tired during this time but there's another part of me that is so revved up its impossible to sleep.

This will last usually a few hours before calming down but then it leaves me with some new deficit- usually cognitive. Dissociation will be worse, psychosis, dementia, anxiety... something. And of course I'll have no sleep that night. However it doesn't matter how tired or fatigued I am, this heightened state will keep me awake for hours or days sometimes.

I've never heard of anyone having PEM like this.
 

Seven7

Seven
Messages
3,444
Location
USA
Well I see this in the sense that is related to my orthostatic intolerance (OI). It has something to do w neuropeneprhine or whatever the hormone is called.

I can duplicate issue if I skip my OI meds. So I am sure 100% is what it is for me. If I keep the whole day on my OI meds then I do not experience this.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
I went through a period like this. It was a nightmare.
It wasn't so much PEM, it was just the way my ME was behaving at that time.

My gp prescibed low dose amitriptyline for it - which did help with sleep and staying asleep, but the side effects were so horrendous I had to stop it.

Eventually, it sort of stopped of its own accord, although I don't think it would have if I hadn't had the sleep it did actually give me.
I now use various herbal or OTC sleep remedies. I find changing them around a lot helps to stop them from becoming ineffective.

It's not just the nightmare of the lack of sleep - it's the nightmare of not being able to escape from living for a few hours every day. :(
 

Aerose91

Senior Member
Messages
1,398
It's weird because it feels like my brain is split during this- there will be the part that is tired and exhausted and another part that feels like my finger is in a light socket. I take Nyquil and stuff for sleep but no matter how groggy I am this will wake me up and keep me up.

Yes it is horrible, my whole disease is progressing so much because of it
 

Tristen

Senior Member
Messages
638
Location
Northern Ca. USA
Anytime I overexert it doesn't hit me until I'm sleeping. Then, I will be woken up and I'm absolutely red lining. Nerve pain all over, heart beating hard, trouble breathing because my lungs feel tight, tinnitus louder, increased cognitive difficulties. I'll just be totally buzzing. I'm still extremely tired during this time but there's another part of me that is so revved up its impossible to sleep.

This will last usually a few hours before calming down but then it leaves me with some new deficit- usually cognitive. Dissociation will be worse, psychosis, dementia, anxiety... something. And of course I'll have no sleep that night. However it doesn't matter how tired or fatigued I am, this heightened state will keep me awake for hours or days sometimes.

I've never heard of anyone having PEM like this.


This sounds like a typical PEM for me, just that it's hitting you at night. For myself, PEM is an exacerbation of my regular ongoing symptoms, which includes all of what you describe, and more. It will hit anywhere from 8 to 24 hours following a stressful event (physical or mental) be it day or night. As long as the crash continues, I will experience all the symptoms that you describe through night and day. Insomnia, feeling wired, increased tinnitus, and all the other neuro symptoms.

When my me/cfs is severe, PEM would last a month. When doing better, it will last a day or two. But the start of the crash is almost always is delayed.
 

Aerose91

Senior Member
Messages
1,398
Yes it's always delayed for me but it's always, 100% of the time while I'm sleeping. Never hits me while awake no matter what time it is
 

PNR2008

Senior Member
Messages
613
Location
OH USA
I'll be going along thinking that I didn't overdo but when I go to bed, sleep hardly comes. Then I know what's in store. Sleepless nights, and for days pain, exhaustion, an inability to do the smallest brain problem, no appetite and very little movement out of bed, depression, anxiety and the horror of thinking "I did it again".
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
It's weird because it feels like my brain is split during this- there will be the part that is tired and exhausted and another part that feels like my finger is in a light socket. I take Nyquil and stuff for sleep but no matter how groggy I am this will wake me up and keep me up.

Yes it is horrible, my whole disease is progressing so much because of it

Its called in ME circles "tired but wired" and is a very common ME thing.

Maybe your are running on high adrenaline during the day too much and then just have that "crash" when you try to slow down and suddenly the adrenaline which was in response to probably OI issues drops.

Note.. a delayed reaction in "payback" in ME/CFS is very normal and what postexertional P.E.N.E. is.
 

zzz0r

Senior Member
Messages
181
Has anyone being helped by methylfolate regarding PEM? I have manage to coutner all my other symptoms and have a normal day as long as I do not excerise. Then PEM takes place. And let me guess your body is not able to sweat?
 
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