• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Flare after social

Emmarose47

Senior Member
Messages
2,115
Location
UK
Had a good run of stable ( ish
Last Sunday had friends over and laid on grass in garden and socialised for 40 mins .
Whilst they visited I literally felt something switch in my brain and I couldn't think straight ..
Then the nerve pain in head , tinnitus and 4 days later bam in full flare .
The pain is bad

I've posted on this before but I just don't get it ??
I was laying down , sunglasses on ...
What on earth caused such a bad crash ) could take wks now to get stable again .

It's my b day next wk ...urrrrr
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
What on earth caused such a bad crash

Socializing. That takes significant brain exertion. Sometimes even a brief chat with a cashier was enough to trigger PEM. I think I could socialize without PEM now (Yay cumin!), but I've just gotten used to being a hermit.

You need to learn your limits for socializing, just the same as with physical activities.
 

Rufous McKinney

Senior Member
Messages
13,251
Last Sunday had friends over and laid on grass in garden and socialised for 40 mins .

Friends, plural? Forty minutes does not "seem" unreasonable.

One of my worst crashes: I simply sat at a table while three other young women chatted together. I didn't even talk much, and I wasn't required to participate, and I was just relaxed and rather enjoyed their chatter.

There is some huge PHYSICAL cost to thinking. Another we discussed recently around here is simply all the breathing that talking requires. For me, my throat is shot. My throat will just give out and its hardly worth it.

Like reading a short blurb here, I can sort of handle and writing a brief response. I can handle. There are pauses. We are taking our time here, responding. Different from in person.

Social includes ALL THREE: physical emotional and mental. Maybe thats part of why it seems to be one of the great challenges.

The worst crash just experienced: involved an hour of conferring with a new dentist, which required I discuss my entire medical history, review of past abuses which now have lead to more tooth troubles, and lots of other details all of which was far more than I could POSSIBLY cope with.

Within 11 hours: the presumed virus in my stomach reactivated and I was on my near death bed yet again. Its a month later and I'm maybe a bit recovered?

I have three dental appointments, each a few days apart, in 20 days.....
 

keepswimming

Senior Member
Messages
327
Location
UK
I just replied to you about this on another thread, but I will put my response here too...

Social is my worst trigger too. I measure HRV and when I do any kind of socialising my HRV absolutely plummets (meaning my body's stress levels are sky high). That helped me understand why socialising crashes me so much - for whatever reason it obviously takes an awful lot of energy. I think it's mentally and emotionally more draining than we realise.
 

hapl808

Senior Member
Messages
2,052
Weirdly sometimes my HRV is fine (stress levels on Garmin will actually show as low when I'm socializing), but it still crashes me. I find socializing in the afternoon is much less likely to crash me than in the evening. The more engaged I am (laughing and talking) the worse the crash. All seems very strange, as sometimes an enjoyable conversation will crash me much worse than actual mental exertion (working on a computer problem).

No idea why, but I suppose some kind of weird neurotransmitter thing. Been meaning to try to pre-treat with Valium. I don't like taking it, but I socialize so rarely that it wouldn't really be a big risk.
 

lenora

Senior Member
Messages
4,913
I've learned....no telephone calls after 4:00 p.m. at the latest. Have a single friend over for coffee at approx. 11:00 a.m., or a very light lunch at most. Explain why to the person....most people understand that energy has to be directed in certain areas, or they don't have a lot of empathy.

No socializing in the afternoon or evening for me (we all have differences, I'm sure). A bag of cookies is always good to have on hand and French press coffee is great. Often the other person doesn't want anything and will leave after 30 min. at most.

Do I like having to be this way? Well, in my younger years, of course not. Today, it simply doesn't matter as much. My friends have their own problems and we respect each other's necessities. Probably one of the advantages of getting older.

With my family, either they come and take over the entire upstairs (daughter and her family from CA), help themselves to whatever they may want, clean up after themselves. If our daughter here joins us with her family, either she brings the cooked food, or everyone in their families has a joint project going in the kitchen, again including clean-up. I'm grateful.

While my family is here I'll often disappear unannounced to go lay down and recharge my batteries as best I can. I make no production of this and they know exactly where I am. I sit with them as much as possible. We have to keep amendments throughout life. There are simply times that are better than others.

Today is good.....my fractured pelvis (still healing) lets me sit outdoors, enjoy the birds, etc., the breeze and even walk around a little. Who knows what tomorrow will bring? Having ME presents an ever changing scene. I'm just grateful that yes, I'll have more pain but I can walk again. (There was a crooked lady, who walked a crooked mile, etc.). Be kind to yourself and your loved ones. Yours, Lenora.
 

Rufous McKinney

Senior Member
Messages
13,251
thinking of humans as energetic beings....when one being gets nearer to another being...the energies can be picked up on ....its possible that is somehow ALSO involved.

Our isolation...maybe it doesn't help the situation because we are so starved for human contact and interaction.
 

keepswimming

Senior Member
Messages
327
Location
UK
Heart Rate Variability. Low HRV means high stress levels (sympathetic nervous system) whereas high HRV shows a state of relaxation (parasympathetic nervous system).

I measure mine on my garmin watch. There's an active discussion about it here.
 
Last edited:

hapl808

Senior Member
Messages
2,052
Weirdly my HRV (Garmin Stress) is much worse during the afternoon, but I can talk on the phone some without crashing. My Stress is much better in the evening, but if I talk on the phone I'll still crash. HRV shows my crash itself, but it hasn't been helpful in avoiding the crashes.
 

keepswimming

Senior Member
Messages
327
Location
UK
Weirdly my HRV (Garmin Stress) is much worse during the afternoon, but I can talk on the phone some without crashing. My Stress is much better in the evening, but if I talk on the phone I'll still crash. HRV shows my crash itself, but it hasn't been helpful in avoiding the crashes.

That's a shame. By learning which things cause me the most stress and limiting them I've been able to pace much better. As usual we're all different!
 

hapl808

Senior Member
Messages
2,052
Yeah, I wish it were more helpful. I think it's useful to track what supplements I take and what my Battery is the following morning. Maybe it's random, but it feels like a good metric.

But other things make no sense. Relaxing in bed with some tea on a Sunday afternoon. I was able to sleep late and my Battery went up a good amount, but my Stress is registering a 90 and my HR at 100. Yet I'm able to talk on the phone a bit. Tonight my HR will likely drop into the 80's and my Stress below 50 and yet I know a phone call then will crash me.

And as I mentioned elsewhere, sometimes randomly my HRV will look much improved for a few hours or a day, but I have no idea what's going on or why.