Crash vs PEM? Differences?

[GlassCannonLife]

I know there have been a few threads on this but I am still a bit confused and finding it all very vague, hopefully someone can help clarify for me.

Back when I was housebound I'd say do a task that was too much eg cooking a proper dinner. During this I'd have a feeling of discomfort/anxiety gradually well up in my chest and then I'd have to go lie down feeling nasty. I'd then get a bit of PEM - ie more brain fog, a bit more tired, nothing extreme, for a number of days.

I thought that was PEM (just the milder symptoms) and crashing was the first part, where you have this intense build up of nasty symptoms that seem to lead to PEM in the following days. Is that not the case? I saw people describe their PEM as I thought of crashes..

In my current situation where I'm very severe, eg my mum spoke to me for a minute last night and I started having that same feeling welling up. Managed to pull it before it got too intense, but is that me crashing from over exertion during this recovery? Or is that just a normal feature of the current recovery / PEM?

I am on a lot of pregnenolone and cumin still to stabilise and block these effects, as I am worried letting it happen freely will just increasingly worsen me. Can anyone clarify if that is the case? Is it OK to let these horrid feelings well up during recovery from a huge crash, and is it normal? Or if I do that am I just getting worse and worse slowly?

Thanks so much!

 

[GlassCannonLife]

If feel like as it comes with exertions (eg mum talking to me, using phone too much, etc) it must be over exertion and me tempting fate and getting worse?

But as I reduce the pregnenolone, I start to have these feelings even just doing nothing, like lying on the bed doing nothing and I'll start to get that feeling of a welling up crash..??

 

[Rufous McKinney]

We probably experience differing levels of PEM. Different qualities, features, timings, etc.

depending upon what the exertion, was.

I think of PEM and a crash as mostly the same thing. Crash maybe is for the bit more dramatic longer lasting versions.

I will always get tired, feel weird and need to go sit down doing the daily demands like making dinner or dishes. I don' t think of that as PEM, thats just every hour of this, and how to manage it.

Researchers then think about something called baseline. I sometimes wonder about that. As baseline isn't a stable state either. Its been weeks and weeks since I've had a day where I was a bit better.

My baseline is gradually deteriorating, not that is necessary the outcome for everyone but for me at the moment, I'm needing to fight back way harder.

 

[Rufous McKinney]

like lying on the bed doing nothing and I'll start to get that feeling of a welling up crash..??

are you really doing nothing? your probably thinking, or pondering or lap topping.

 

[GlassCannonLife]

are you really doing nothing? your probably thinking, or pondering or lap topping.

Definitely not lap topping! Could barely do that before this crash.

But seems like you think they are worsenings? I think it's because the block wears off so things catch up with me..

 

[GlassCannonLife]

@Nord Wolf you mentioned your PEM sounding like my crashes, could you weigh in here?

Or @Howard have you ever dealt with something like this?

Maybe @Shanti1 or @Judee ?

Not sure if there's a resident PEM expert that could help me out..!

 

[Consul]

Definitely not lap topping! Could barely do that before this crash.

But seems like you think they are worsenings? I think it's because the block wears off so things catch up with me..

Are you just lying there doing absolutely nothing? Not thinking about stuff for example or looking at telephone?

 

[Judee]

I think it's probably both. The pregnenolone/cumin is propping you up a bit and then the building feelings of discomfort that you describe are your warning system the PEM/crash is eminent.

However, I would say to see if you can do smaller doses of the pregnenolone/cumin but maybe more often...not so that you are really increasing or decreasing the overall amount but rather to basically give yourself a more continuous supply, i.e. to try to stay ahead of the downward slide.

Like could you mix your daily amount in a bottle of the water that you drink through the day, taking sips when you feel even just a hint that the PEM is starting?

Still go lay down though. Take both actions. We need all the help we can get but we also don't want to keep increasing because again, it might come down to the law of diminishing returns.

And I would also say, no more "proper dinners." At least till you can get to a better place.

Instead keep it quick and easy like opening a can of something. Still try to get your protein, carbs, and veggies but keep it as simple as possible. Here are maybe some threads that could be helpful:

https://forums.phoenixrising.me/threads/cooking-for-a-crash.61344/

https://forums.phoenixrising.me/threads/meals-when-cooking-is-out-of-the-question.2188/

I also found this one while I was searching. Maybe it would give more ideas about discerning a crash??? https://forums.phoenixrising.me/threads/no-rhyme-or-reason-to-crashes.75571/#post-2190510

I'm sorry you're going through all this. Figuring anything out about this disease can be so frustrating.

 

[GlassCannonLife]

Thanks guys.

@Consul yeah doing too much phone to go over this thread haha but aside from that I am trying to be very disciplined. Message my wife a few minutes a day so I don't go absolutely crazy. Miss her and my son so much..

@Judee yeah those dinners were an example of me pre-covid. At the moment all I can do is lay in bed, eat in bed, and go to the toilet, and have been using phone a little. Yeah I'm already trickling both throughout the day, I just notice it happens even in between the doses..

Today I'm going to do no talking with the parents at all to minimise that exertion and use phone as little as possible..

But yeah so it seems very hard to say if it's just PEM or a new small crash. Everything is so difficult with this illness!

 

[Pyrrhus]

Related discussion:

Is PEM a crash? Is a crash PEM? Semantically distinct? Or distinct phenomena?
https://forums.phoenixrising.me/thr...tically-distinct-or-distinct-phenomena.60968/

 

[Howard]

Or @Howard have you ever dealt with something like this?

My P.E.M. typically hits hard 15 minutes after exertion, and over the years has typically lasted between one and six hours (after a brief physical event - usually bedside commode usage).

Mental exertion resulting in P.E.M. is not as troubling as it used to be. Six years ago I couldn't tolerate any sound, light, conversation, or even quiet music.

Improvement (especially cognitive) initially came with nightly tart cherry powder utilization (for sound productive sleeping), dedicated meditation / mindfulness, elimination of simple carbs (and many other triggering foods), and lastly, using a dedicated UVB light to increase my Vitamin D.

Further improvement has come from being exposed to direct sunlight (multiple hours per day), for the past several months.

In any case, and depending upon how you define it, my P.E.M. is more of a crash. Sensations do not occur unless there is exertion. Early on, anxiety used to contribute and likely worsen my overall symptoms. Eliminating anything "potato'' from my diet helped alleviate my formerly constant brain fog.

Either way, I don't believe the naming conventions matter all that much. I feel that my version of P.E.M. is unique, but really, everybody seems to experience this differently. The after-effects.

Hope this helps

 

[GlassCannonLife]

My P.E.M. typically hits hard 15 minutes after exertion, and over the years has typically lasted between one and six hours (after a brief physical event - usually bedside commode usage).

Mental exertion resulting in P.E.M. is not as troubling as it used to be. Six years ago I couldn't tolerate any sound, light, conversation, or even quiet music.

Improvement (especially cognitive) initially came with nightly tart cherry powder utilization (for sound productive sleeping), dedicated meditation / mindfulness, elimination of simple carbs (and many other triggering foods), and lastly, using a dedicated UVB light to increase my Vitamin D.

Further improvement has come from being exposed to direct sunlight (multiple hours per day), for the past several months.

In any case, and depending upon how you define it, my P.E.M. is more of a crash. Sensations do not occur unless there is exertion. Early on, anxiety used to contribute and likely worsen my overall symptoms. Eliminating anything "potato'' from my diet helped alleviate my formerly constant brain fog.

Either way, I don't believe the naming conventions matter all that much. I feel that my version of P.E.M. is unique, but really, everybody seems to experience this differently. The after-effects.

Hope this helps

Thanks! Yeah I need to get on the tart cherry powder, my sleep is a mess and I heard it can help with kidney dysbiosis.

Indeed sounds like we are all a bit unique.

 

[GlassCannonLife]

@Howard what tart cherry do you buy?

 

[Reading_Steiner]

I would usually say a crash means a marked divergence from the usual symptom patterns, for me PEM takes different forms I guess ? short term it could be feeling dizzy after walking a few hundred metres quickly,
or it could be confusion and strange feeling in the head after walking upstairs once, it could also be feeling consistently tired day after day for a week or longer which is how I feel at the moment, I could go out but it wouldn't be wise, I need to rest but it feels like even though I'm not doing that much its not enough rest, this is probably caused by the fact that my brother lived here unexpectedly for 3 or 4 weeks until a couple of days ago,
and I did a lot of outdoor activity a few days ago, keeping myself going on adrenaline, and I had a lot of exposure to a room that triggers my MCS / immune induced deterioration.

Typically a crash for me lately involves weird stomach symptoms, filling up with gas, I become irritable and easily distracted, I get worse even doing simple stuff like talking on microphone and or helping someone do their maths. It can also be preceded by a feeling of reckless hyperactivity. Crash generally means for me that i'm doing 80% to 95% less activity than previous days or weeks whereas in PEM I maybe do 30% less to 50% less,
I feel different in the body, either extreme reluctance to move, or a sort of uncomfortable heat and physical anxiety where I will try to lay still and sleep but I cant, or it feels like someone pulled the plug out and my energy is being sucked into a vacuum out of every single cell or atom in the body. I'll become overly emotional or overly nostalgic, simple activities like even the most boring and slow of video games becomes too much and overstimulated the nervous system ( or some music or videos ).

 

[Loomcgoo]

I've not been able to go through this thread, my cognition is depleting fast. This may already have been mentioned. It's by Workwell and they describe 3 types of PEM click on this title: Three types of PEM.

Socialising is highly taxing (to understand and produce language takes energy and memory). Especially with those close to us (there can be a lot of different emotions which is very tiring). If you can limit anything that is taxing, then it will allow your reserves to build.

Bateman horne centre have created a survival guide. Click on this title to go to the webpage: Crash survival guide

They have also designed communication cards, reducing communication can really help reduce the energy needed to get out needs met. Scroll to the bottom of the link to see them, then select what you want and click submit. Click on the this title: Communication cards .

Sorry in advance, if I am repeating what anyone else has shared, unable to go through the thread to check.

 

[Dechi]

To me a crash is when PEM won’t go away after a certain time. So a crash is PEM with a long duration and sometimes disease aggravation.

 

[Howard]

@Howard what tart cherry do you buy?

It's difficult to determine the authenticity of supplement ingredients and their amounts, but I am using Solaray Tart Cherry Fruit Extract right now.. however, I suspect most varieties are fairly similar.

 

[GlassCannonLife]

It's difficult to determine the authenticity of supplement ingredients and their amounts, but I am using Solaray Tart Cherry Fruit Extract right now.. however, I suspect most varieties are fairly similar.

Awesome, thank you. Just one capsule before bed.?

Edit: saw the serving is 2.! I'll just buy some and give it a try

 

[Howard]

Awesome, thank you. Just one capsule before bed.?

Edit: saw the serving is 2.! I'll just buy some and give it a try

I take one capsule approximately two hours before bedtime. You may wish to start off with half of one capsule if you are sensitive to supplements, etc. Also, tart cherry can cause intestinal bloating.

Hope it helps

 

[Shanti1]

@GlassCannonLife
My take is that the uncomfortable feeling in the chest may be part of dysfunctional sensory gating with the inability of various areas of the brain and limbic system to filter out sensory input and interpret it appropriately, causing an anxiety-type immediate reaction. The inability of the brain to correctly process input contributes to inappropriate brain and efferent responses including PEM, and dysautonomias. So I think the sensation and PEM could be linked. I am guessing one reason pregnenolone works so well is that it is a neuroprotective steroid and may be stabilizing some of the aberrant neuronal activity and microglial inflammation. I haven't looked at the mechanism for cumin, but perhaps it has some activity in this regard as well.

Among the many ways COVID seems to disrupt our homeostasis is to disrupt the blood-brain barrier (ref) and induce neuroinflammation via cytokine pathways (ref)(ref), This adds insult to injury in pwME and I consider it to be a substantial mechanism for worsening of symptoms.

As far as the difference between PEM and crash, I guess PEM has more of a formal medical definition of a worsening of symptoms after physical or mental exertion, but "crash" is a bit more of a subjective term without a formal definition, so everyone may use it a bit differently. I have used it to refer to a long period where things were worse, "I had a bad crash in the fall of 2021", but I will also say to my husband, "I'm crashing" and it just means I can feel I'm going down for a few hours.