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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Is Emotional PEM a thing?

Do you experience high emotions during PEM

  • I sometimes experience high emotions during PEM that don’t feel like my own emotions.

    Votes: 12 63.2%
  • I sometimes experience high emotions during PEM but I think they are my own emotions.

    Votes: 4 21.1%
  • I don’t experience high emotions during PEM.

    Votes: 3 15.8%

  • Total voters
    19
Messages
312
Location
USA
.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.

What you said is so true, @lenora . I don't know how we'd get through the necessary things in life without adrenaline rushes, and I'm VERY grateful for it as well. It helps me get to the doctor. If it would only fix my plumbing problems. :lol:
 

lenora

Senior Member
Messages
4,913
Yes, I find my attention isn't what it used to be. Is it ME or something else entirely I?'ve been tested for the usual at this age, passed OK, but no sleep doesn't help much either. However, there are times when I'm much more alert with no sleep, than what passes for ME sleep at times. I feel worse with that.

To help myself, I stop answering the phone or taking calls at 4:00 p.m. Family & friends are well aware of that. All can text my husband in case of an emergency. I had to start doing that many years ago and it has helped. The same with eating....I don't drink anything after about 4:00 p.m. (OK, sips of water, but that's it) and have a small snack no later than 5:30 p.m. or so. I didn't read any of this, it just seemed to make sense. Time zones do make things harder, so I use e-mail a lot. I spend as much time on our porch as possible...calming and enjoyable.
But yes, our brain chemicals seem to be rather messed up. In some cases (mine for example) it's a mix of both physical and the leftovers of adrenaline. I've had brain surgery, so that's thrown into the mix, also. It will take time to figure this one out. Yours, Lenora.
 

Rufous McKinney

Senior Member
Messages
13,251
I think I am on about day 3 of a PEM crash tied to too much emotional. I got very excited in a positive way, about possibly moving to where my daughter lives. A bizzarre version of the ME symptoms arose- my eyes are glued shut, I am massively inflamming.

My anxiety levels are increased dramatically.

Its so strange to just sort of passively witness it all. Or not so passively.
 

Rufous McKinney

Senior Member
Messages
13,251
because seriously who’s going to stop themselves from getting excited about something when we get so few chances to do that! But living near your daughter sounds so great 😄

Yeah but I sort of had to. Its the oddest thing, to have to put the brake on feeling elated, or extra happy or emotionally positive about something. I get really quickly PEM ridden from emo events.

I"m sort of the opposite of anhedonia- of feeling flattened- I feel far more like I experience big shifts in mood and emotion, and my nervous system is very primed/jumpy/acute.

so earlier, I simply was sort of requesting assistance with a postiive outcome on getting a COVID shot, and just that sort of emotional state- caused me to start to cry. So I squelched that.

I am however, going to end up somehow or another, living closer to my daughter and grandaughter, which is simply the thing I must do.

And it would be so great! So it will be.:hug:
 

nina22

Senior Member
Messages
174
Yeah but I sort of had to. Its the oddest thing, to have to put the brake on feeling elated, or extra happy or emotionally positive about something. I get really quickly PEM ridden from emo events.

I"m sort of the opposite of anhedonia- of feeling flattened- I feel far more like I experience big shifts in mood and emotion, and my nervous system is very primed/jumpy/acute.
I just watched this movie on Netflix that reminded me of what we’re going through with emotional triggers. It’s called “Ode to Joy” and the main character has Cataplexy (he passes out when he feels strong emotions, especially happiness) he keeps trying not to feel things and I could relate so well! I highly recommend it! I was crying with laughter… because it was good, not because my nervous system is extra lol
 

ChookityPop

Senior Member
Messages
583
I think I am on about day 3 of a PEM crash tied to too much emotional. I got very excited in a positive way, about possibly moving to where my daughter lives. A bizzarre version of the ME symptoms arose- my eyes are glued shut, I am massively inflamming.

My anxiety levels are increased dramatically.

Its so strange to just sort of passively witness it all. Or not so passively.
Can I ask if you experience it like I described here?
https://forums.phoenixrising.me/thr...n-after-straining-your-brain-brain-fog.89591/
 

lenora

Senior Member
Messages
4,913
@Rufous McKinney....You've had a lot going on in a short period of time. Much of it very confusing and decisions that are hard to make.

When we aren't well, it seems that everything is worse (and is, I'm sure). Just do as you're doing....trying to make one decision at a time, assessing the situation as a whole, talking to doctors and filling in those eternal forms. This is hard for anyone....let alone people like us. Rest as much as possible.

The therapists need to do their jobs as much as possible. Have you been able to talk to them yet about Michael's progress? Certainly a speech therapist can work with him in his room, if necessary.

I know you're worried about other matters. At a certain time, they simply have to wait otherwise even a normal brain becomes overwhelmed. I hope things soon become easier. Yours, Lenora