Is Emotional PEM a thing?

[nina22]

Apologies if there’s a thread about this elsewhere but I wanted to see if this is a specific CFS symptom or if I’m imagining it…

so sometimes when I’m bedridden with PEM it just feels like a heavy brain fog but emotionally I’m fairly cheerful, just “crap this sucks” and then I watch tv.
But at other times I wake up with extreme emotions like depression or even fear and I don’t remember having specific thoughts that caused those feelings. Then as soon as the physical PEM stops, so do those emotions. I’ve even had thoughts of dying and then poof an hour later I can’t imagine wanting that. And no it’s not PMS, I checked the calendar lol Am I going crazy? Does anyone else experience this?

 

[bensmith]

Yes my first symptom

It’s like the final scene of melancholia all the time

 

[hapl808]

Pretty normal PEM symptom to me. I wouldn't even call it depression because it lasts for the period of PEM and if I don't get PEM, I don't feel that way. A lot of times I just vent in a journal (because it would be too toxic to tell someone, and they'd think you were crazy when you felt less of those feelings 12 hours later).

But it's one of the many awful parts of PEM - and should belie the idea of it being just 'depression' or something. If I just stay in bed, I don't get PEM but I get bored (and hungry). If I sit in front of the computer too long, talk on the phone too long, cook in the kitchen too long - all enjoyable things but that might trigger PEM.

When I used to let family or friends push me to go out (when I was moderate), they'd always ask, "See, don't you feel better?" And I'd say, "Sure." before spending the next few days in bed in absolute misery. I felt better even while at a doctor's appointment - because I get bored easily so that was more interesting. But the brutal crash afterwards never felt 'better' to me.

 

[Hip]

If you check the Canadian consensus criteria, you see that ME/CFS can involve a number of emotional dysfunctions, including:

• Emotional lability (aka: pseudobulbar affect) = unstable, random or exaggerated emotional responses
• Hypersensitivity to emotional overload or stress
• Emotional flattening (weakened emotional responses)

Depression, anxiety and panic attacks are also common in ME/CFS.

 

[Booble]

That's another immune system thing. If your immune system produces cytokines, they are known for causing depression or anxiety. (For me it's the latter. Like weird anxiety being scared of silly, non-dangerous things.)

 

[Pyrrhus]

Possibly related discussion:

Can anyone relate to feeling bipolar-ish???
https://forums.phoenixrising.me/threads/can-anyone-relate-to-feeling-bipolar-ish.51164/

 

[nina22]

Thanks for responding, you guys, that really helped to identify those feelings as a symptom. I know I have some normal depression that comes from living the highs and lows of this illness, but I think during PEM I also have extra emotional lability or hypersensitivity and that kept confusing me. Now that I know the difference, I can stop worrying that I’m permanently irrational lol!

 

[Aspen]

Me too!! I always get unusually anxious during PEM. Feels like a physical kind of anxiety, no real trigger like you said but still pretty overwhelming for a while. I’ve learned the hard way not to make any decisions or send any emails during this time, haha! And I usually feel an intense depressive episode just during the peak of PEM, sometimes just an hour or two, or maybe up to a day. When I feel low I let myself be as sad as I need to but I know it won’t last long so I don’t worry about it - I have good mental health strategies that keep me stable at other times so I know it’s just a PEM symptom and I don’t need to second guess my whole mental health! It’s definitely a good motivator to stay inside my energy envelope though, it’s a lot to recover from if I overdo things.

 

[J.G]

Interesting poll.

At the top of the PEM curve, I experience increased anxiety and find myself moody. That's about 48 hours post-exertion for me. It took me a little while to become aware of this PEM-emotions connection, but now that I know the pattern is there, I find that it holds up every time. The emotions ride in on the coattails of PEM and the physical discomforts and frustrations of PEM magnify them. That said, I've learned to anticipate those negative feelings, so I'm able to channel them fairly well as I wait for the PEM bulldozer to shove off.

Here's another angle. Do you get PEM from experiencing strong emotions? I know I do.

Basically at my most severe, strong feelings of joy (laughter) and sadness (crying) both invariably triggered next-day PEM. Emotions still sap my energy hard, but thanks to overall more stable health, their impact on I-wish-I-knew-what-pathomechanism isn't quite as pronounced as it once was.

 

[hapl808]

Yes, I could extreme PEM from not even 'strong' feelings, but really any prolonged feelings at all. A pleasant multi-hour phone conversation will pretty reliably crash me for 1-2 days. A shorter stressful conversation will likely do the same. I don't get as much physical PEM because I've been housebound for years, so I rarely exert myself too much. Doctor's appointments, though, still reliably crash me as well. I keep thinking I'll avoid it by avoiding extra exertion (wheelchair, someone helping to coordinate), but I think just the 'enjoyment' of getting out of the house contributes to the crash.

 

[nina22]

Oh yes I definitely get PEM from any spike in emotions too, excitement and happiness as well as unhappy emotions and stress. I used to get so excited about not being bedridden, when I’d come out of a crash, that I’d put myself right back in bed lol! Now I take it slow…

 

[YippeeKi YOW !!]

Apologies if there’s a thread about this elsewhere

None tha I've seen, but then, there are almost 70,000 threads on this site ....
@nina22
This is a really interesting, thought provoking, and revelatory thread/issue/question.

Which sadly, Im no where near up to just now, but it's made me think and now I have to deal with how to organize those thoughts and try to express them here, briefly, which as some of you probably know, is not my best thang ...

Really, really good thread, nina. Ah'll be bahhhck, to quote whatsis ....

 

[Booble]

Oh yes I definitely get PEM from any spike in emotions too, excitement and happiness as well as unhappy emotions and stress. I used to get so excited about not being bedridden, when I’d come out of a crash, that I’d put myself right back in bed lol! Now I take it slow…

That is me this week.
I had a good week yesterday with two great client calls that had me on a high. So high that by the weekend I was a suffering and now I'm wondering how I will manage to get through this week.

We had a similar talk about this in a post I made a few months back titled, "I hate adrenaline."

 

[nina22]

@Booble yeah the post about “anyone feel bi-polar touched on the adrenaline high too, it’s just so hard to hold back when you finally get a good day! Arghh! Lol

 

[nina22]

@YippeeKi YOW !! Thanks 🤓 it was stumping me, I was stumped, so I appreciate all the future musings 👍

 

[Diwi9]

I haven't read the whole thread, but this is the sort of information that doesn't seem to be distributed or studied in the treatment of ME/CFS....and it would be so helpful in counseling patients to understand that some of the anxiety they deal with during their crashes is outside of their rational brain, it is happening to them and not by them. I appreciate the long Covid studies showing cognitive problems with planning, I would extrapolate that to include decision-making.

 

[christiankatz]

When I used to let family or friends push me to go out (when I was moderate), they'd always ask, "See, don't you feel better?" And I'd say, "Sure." before spending the next few days in bed in absolute misery

Ah, yes, this happens to me, though I don't actually go out except to the doctor (and vet), and when I do, I get an adrenaline rush, and whoever is with me wonders how I could possibly be ill, as I talk too fast and laugh and feel great, but then I'm recovering for days or weeks. They don't see that part. They don't see the struggle we go through to recover from everything.

I'd say for me, emotions are the toughest part of PEM @nina22 You're in good company.

 

[lenora]

Hello Everyone....I think adrenaline works for us and against us. I know I would have a very small life without adrenaline...which then makes me look healthy and a part of ordinary society.

I think we have to take into account that brain chemicals are somehow implicated in this illness. Why? Who knows, and who knows what they are? What does adrenaline become after we've used it, does it add to these b chemicals?

The other thing is this: Even without PEM or a good dose of adrenaline, it's possible to be up and down during the day. We learn ways to pull ourselves back out, we have to. I'm actually more of a loner, but do realize that having friends is important and will do whatever is necessary to keep them. Phone calls have to be with a good dose of adrenaline....actually, thank goodness for it. The one exception would be my family. It's all energy and how we choose to expend it. Yours, Lenora.

 

[nina22]

It would be so helpful in counseling patients to understand that some of the anxiety they deal with during their crashes is outside of their rational brain, it is happening to them and not by them.

Yeah that’s exactly my thinking in asking this question @Diwi9 because if it’s a physical symptom then the way I treat these emotional episodes will be quite different to how I treat my own sadness or anxiety. And it would make sense that the usual counselling tactics and emotion work don’t seem to be successful. I think being able to differentiate this “reaction” from my own emotions might be a huge help in coping.

 

[nina22]

@christiankatz yeah it’s the hardest symptom in my grab-bag. Solidarity lol 👊