How do you classify your PEM? How does your PEM behave? How has it changed over time?

[RyeRyeBread]

I classify my PEM in two main ways - crashes (PEM main "episodes") & flares (the hours/days of recovery/worsening of symptoms and baseline after a PEM crash).

Looks like this:
I'll do an activity/exert myself >> I crash (for me, usually a few hours after the activity, and lasting for 2-6 hrs after) >> I recover from initial crash, but then I have a flare (worsening) of symptoms, usually for a few days after

*sometimes I only seem to have a flare, without a full crash (when I've pushed myself too much, but not quite past the threshold of crashing)

[I suppose technically, both the initial crash and the flare up afterwards that I describe as separate, could both be encompassed more simply as just PEM. It really is all one big PEM crash, but I like defining the behavior of mine in more detail like above]

How does your PEM behave? How has it developed with your illness/as time goes on? What level of severity would you describe yourself now?

- - -
*I'm only 8 months in, started more mild overall, but had lots of bigger crashes in a short span of time, and now I'm moderate and somewhat housebound
*My PEM started out being pretty much rolling/constant. Then went on to be easier to differentiate from my baseline of symptoms, but still pretty frequent. Now, that I have been pacing better and have my comorbid POTS under control a bit more, I have flares often but full-blown crashes a little less (or rather, they are smaller and shorter than at first, but perhaps more frequent than i realize 🤔). My overall baseline of symptoms is worse than before.
** I'm going to make a separate thread for this one, but I've been waking up (from naps and sleep) occasionally feeling like I've crashed - and honestly it catches me off guard, because I wasn't aware I had pushed myself that much (as per usual with ME lmao),, I'll be posting about this after this one so if you relate please chime in on that thread lol

 

[Pyrrhus]

I classify my PEM in two main ways - crashes (PEM main "episodes") & flares (the hours/days of recovery/worsening of symptoms and baseline after a PEM crash).

That's an interesting distinction. You may find this thread interesting:

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

 

[Wishful]

My PEM was flaring up of my ME symptoms 24 hrs after muscle-straining physical exertion (but not general exertion). Cognitive exertion has a shorter delay (< 1 hr?). My PEM usually lasted <24 hrs. No 'crashes'. I don't think my PEM varied much over time.

I was able to block my PEM with cumin (cuminum cyminum): search for my thread about it if you like. After ~2 years of taking cumin, I stopped getting PEM. I'm still PEM-free.

 

[Pyrrhus]

My PEM was flaring up of my ME symptoms 24 hrs after muscle-straining physical exertion (but not general exertion). Cognitive exertion has a shorter delay (< 1 hr?).

That's fascinating. I also have a shorter time delay for cognitive exertion.

For me, physical exertion causes PEM about 36 hours later, but cognitive exertion causes PEM about 2-8 hours later.

 

[Wishful]

That's fascinating. I also have a shorter time delay for cognitive exertion.

My hypothesis is that physical exertion triggers PEM via the body's immune systems, which then triggers the glial cells, which in turn leads to the neurological dysfunction resulting in PEM symptoms. Consistent delays, especially lengthy ones, seem typical for immune reactions. Cognitive exertion either activates the glial cells directly, or changes some other neurological factors that trigger the same mechanism that leads to the PEM symptoms, but is delayed mainly by the level of cognitive effort and maybe related factors (nutrient levels, time since last sleep, etc).

 

[Rufous McKinney]

ME Action posted this for today, Friday- focused on PEM..

https://www.meaction.net/2022/02/02/facets-of-me/#pem

 

[Nord Wolf]

I would label my PEM as constant/rolling. It intensifies after the smallest physical exertion, and flares with acute busts after mental exertion.

All of the below is instigated and occurs with exertion, physical or mental. Physical exertion causes more pronounced and severe PEM (bed ridden quality) than mental, but mental can severely worsen physical PEM. Though I have had more rare episodes of acute and very extreme PEM from mental exertion (intense fatigue, loss of the ability to speak, think… any cognitive function, severe full body weakness). PEM can be instigated by a night terror, nightmare or just a stressful dream.

Physical exertion PEM starts within an hour after pushing the limit. Mental PEM starts within an hour as well. My PEM seems Rolling in that it never full goes away before the next crash… no matter how long between crashes I can manage.

These symptoms can start in various successions from 1 hour to 2 days post exertion and last from a week to three weeks.

• Dizziness
• 
  
• Lightheadedness
• 
  
• Shortness of breath
• 
  
• Spike in heart rate
• 
  
• Frail shaky nervous system
• 
  
• Fatigue
• 
  
• Mental fog
• 
  
• Mental glitches (memory, finding words, concentration, communication)
• 
  
• Hard to almost impossible to make decisions
• 
  
• Weakness of thighs muscles
• 
  
• Severe increase in tinnitus
• 
  
• Sensitivity to sound
• 
  
• Sensitivity to light
• 
  
• Exhaustion
• 
  
• Full body muscle weakness
• 
  
• Severe fatigue
• 
  
• Inflamed lungs and sinuses
• 
  
• Labored breathing
• 
  
• Acidic lungs
• 
  
• Cannot get enough air
• 
  
• Cannot fully expand chest walls
• 
  
• Cannot fill lungs
• 
  
• Wheezing
• 
  
• Swollen lymph nodes (neck, underarms mostly)
• 
  
• Swollen mildly sore throat & up behind nose
• 
  
• Overheating and dryness (low unregistered tidal fever)
• 
  
• Spontaneous sweats, even when cool and just lying down
• 
  
• Cool feet and hands
• 
  
• Spontaneous chills
• 
  
• Chest palpitations - some are so strong they stop me in my tracks with intense tunnel vision, lightheadedness, dizziness and shortness of breath
• 
  
• Hyper-erectile function with hyper-sensitivity or pain (can last hours)
• (I dare not even think about trying to use that energy because that would crash me in horrid PEM states for 12 to 14 days)
• 
  
• Dry inflamed eyes
• 
  
• Foggy eyesight - can be so severe I lose the ability to see
• 
  
• Twitchy muscles
• 
  
• Tendon and fascial pain - pelvis, hips, legs, feet, forearms, upper back, neck
• 
  
• Pain in many old injury sites
• 
  
• Pain in inguinal region
• 
  
• Over all body aches and pains
• 
  
• Muscle cramps in feet
• 
  
• Increase sensitivity to smells
• 
  
• Spleen ache
• 
  
• Constipation
• 
  
• Fitful sleep
• 
  
• Insomnia
• 
  
• Increased night terrors and other dream disturbances
• 
  
• Wake too early
• 
  
• Always wake exhausted and unrested
• 
  
• Fleeting mild spells of nausea
• 
  
• Head pressure - strong
• 
  
• Headache - strong to severe
• 
  
• Irritability
• 
  
• Depression - strong
• 
  
• Grief - sometimes extreme

 

[hapl808]

Good list - I probably have about 80% of those.

One thing that frustrates me to no end is horrible hacking and coughing LPR reflux always seems to precede any PEM crash, even minor ones.

I've tried slippery elm, marshmallow root, baking soda, melatonin, fenugreek, triphala, kefir, probiotics, mastic gum, sleeping at an angle, enzymes, and so forth. Some give a small amount of relief, but if I don't push myself into a crash then I get almost no LPR reflux. If I talk on the phone for a couple hours, then I wake up the next morning sounding like I'm trying to cough up a lung.

I've posted about it here but found nothing that seems to help.

 

[Pyrrhus]

One thing that frustrates me to no end is horrible hacking and coughing LPR reflux always seems to precede any PEM crash, even minor ones.

You've probably already tried this, but a simple calcium antacid calms down my Laryngo-pharygeal Reflux (LPR) within 30 minutes. But yes, LPR is horrible.

 

[hapl808]

You've probably already tried this, but a simple calcium antacid calms down my Laryngo-pharygeal Reflux (LPR) within 30 minutes. But yes, LPR is horrible.

Usually baking soda does that, but I should try calcium carbonate kinda stuff again - haven't used it in awhile. Was trying also DGL, Pepcid (I don't like stuff like that, though), etc.

I guess the issue is I'm trying to stop it before it happens. I usually wake up with the hacking cough, and even some tea with cheese and staying upright for 30 minutes will calm it down, but that much coughing exhausts me for the whole day. It also wakes me up at 5am and then it's 30 minutes of coughing and maybe another hour to try to go back to sleep. Was hoping cromolyn might help stop the reaction before it starts but hasn't seemed to work.

It just seems weird that overdoing physical activity or phone calls is what triggers it, not foods or drinks. Some kind of gut bacteria thing? The later I talk on the phone, the worst the reflux.

 

[Pyrrhus]

It just seems weird that overdoing physical activity or phone calls is what triggers it, not foods or drinks. Some kind of gut bacteria thing?

As I might have mentioned before, LPR seems to be a type of dysautonomia:

Gastrointestinal Reflux as Dysautonomia
https://forums.phoenixrising.me/threads/gastrointestinal-reflux-as-dysautonomia.86644/

 

[hapl808]

As I might have mentioned before, LPR seems to be a type of dysautonomia:

Yeah, I thought that thread was helpful as other symptoms of dysautonomia are some of my main issues. Have thought about beta blockers or something for my tachycardia, but I feel like that might be hiding the underlying issue rather than fixing it. Not sure.

 

[Rufous McKinney]

These symptoms can start in various successions

I started reading thru your list...then realized I was still reading thru your list... I am now trying to recover from wanting to laugh at how ridiculous is this list, and how I probably have 80% of that going on, too.

Low unregistered tidal fever.....can you clarify?

HYPER ERECTILE FUNCTION- is that the opposite of Not Functioning?

Hard to almost impossible to make decisions

I believe this could serve as a form of Diagnostic and PEM testing criteria. You just shove some decisions in front of us and get out a timer. The Japanese call it Executive Function. (perhaps a better term would be Execute My Dysfunction).

"ROLLING PEM"- maybe this is simply the illness itself. The PEM Is the worsening the poisoning the punishment.

 

[Nord Wolf]

One thing that frustrates me to no end is horrible hacking and coughing LPR reflux always seems to precede any PEM crash, even minor ones.

That is one condition I seem to have been spared.

 

[Nord Wolf]

I started reading thru your list...then realized I was still reading thru your list...

Ha, yea it's a lot, and I didn't even put everything in that list I have going on.

Low unregistered tidal fever.....can you clarify?

It feels like I have a fever, but one so low it doesn't register on a thermometer, though its strength feels like it should. It acts like a tide whereas it creeps up in the afternoon, peaks in early evening, then starts subsiding again.

HYPER ERECTILE FUNCTION- is that the opposite of Not Functioning?

Yes it means erectile function is excessive. They either come and go with absurd frequency (up for 30 mins, down for 2, back up for 30, down for 2...lasting hours on end), or they come on and last solidly for between 3 and 13 hours without letting up. At times they can be so pressurized they are painful as well. I had one female doc about 8 years ago tell me that I shouldn't complain, because most of her male patients would kill to have such a condition. I wanted to smack her.

 

[Pyrrhus]

It feels like I have a fever, but one so low it doesn't register on a thermometer, though its strength feels like it should.

Very common in ME:

Fever without a fever
https://forums.phoenixrising.me/threads/fever-without-a-fever.51587/

 

[Rufous McKinney]

It feels like I have a fever, but one so low it doesn't register on a thermomete

yeah, thats familiar....not so much lately. My "mild" version included this relapse feeling such that a low grade fever seemed to come with it, but mostly you could not measure it.

Regarding: the hyper function your describing, which I cannot exactly relate to as a female- HOWEVER....when I get MORE run down and crashy- I feel, well, sort of throbbing and overheated in the personal anatomy dept. Its odd. It feels like I have a fever "down there". Maybe thats a bit of what your describing...

 

[RyeRyeBread]

Very common in ME:

Fever without a fever
https://forums.phoenixrising.me/threads/fever-without-a-fever.51587/

Yes, i have this as well! 😊
Actually, i think I might be starting one rn 😅

 

[Nord Wolf]

Regarding: the hyper function your describing, which I cannot exactly relate to as a female- HOWEVER....when I get MORE run down and crashy- I feel, well, sort of throbbing and overheated in the personal anatomy dept. Its odd. It feels like I have a fever "down there". Maybe thats a bit of what your describing...

I couldn't say. The excessive erectile function for me actually started after I endured my second bout of electric shock torture. Docs have told me this was most likely the original cause for the complication, but of course they can't be sure. I've just find it odd and frustrating that it continues to happen now that my ME/CFS has become severe. One of those things that seems out of place with severe exhaustion...

 

[Howard]

My P.E.M. typically hits hard 15 minutes after exertion and over the years has typically lasted between one and six hours.

I do not experience any lingering P.E.M. effects the following day or beyond.

Note: I am bed bound 24/7

Changes

Up until a year ago (six years running), at the 15-minute mark post exertion, I would typically feel nauseous, dizzy, extreme muscle weakness (starting from my legs, then progressing upwards), then eventually I would struggle breathing, before cognitive issues arose and lingered.

*Once I eliminated certain foods, the cognitive issues diminished substantially - prior, I wasn't able to tolerate sound, light, conversation etcetera.

Then, once I stopped eating orally, last year (due to continuing severe gastroparesis) my P.E.M. symptoms extended out to six hours every time (mostly extreme muscle weakness and a new symptom.. temporary sleepiness starting 15 minutes post exertion).

*I do have a feeding tube

Changes Again

In the past three months, however, the duration of my P.E.M. has been trending downward. Right now my recovery takes between an hour or two, at most. The only thing that has changed is that I am now spending about six hours per day outside in the sunshine (I live in Arizona so it's fairly mild this time of year). After not having been outdoors for six years, I am making a concerted effort to raise my vitamin D levels with direct sunlight exposure (cannot tolerate oral vitamin D).

H