How bad is it to crash?

[SpiralOut]

I'm wondering if there is any science that has been done to answer this? Or what people's experiences have been.

Intuitively (and I think I might have read or heard this somewhere) crashing could 'lower the ceiling' for future crash points and/or hurt long-term prognosis of the disease. On the flip side, we have the fact of temporary and permanent remissions suggesting that no long-term damage is done.

In practice I've been finding myself crashing more days than not lately because sometimes it's unavoidable and other times, well I'm just not great at holding back on doing stuff while feeling reasonably ok. But I don't generally wake up the next day still in the crash. Maybe I'm just lucky that I don't usually induce long protracted crashes? I'm not too sure what's considered 'normal'. But I'm definitely worried that I might be setting myself up for worse things to come.

 

[hapl808]

On the flip side, we have the fact of temporary and permanent remissions suggesting that no long-term damage is done.

I generally recovered mostly from crashes...until one day I didn't. For me, a lot depending on how hard I pushed myself. A minor over-exertion would lead to a crash, but if life situations made me keep pushing through some of the more 'minor' crashes, that often would lead to worse crashes and worse lasting decline in function.

I think a lot of people's experience who are more moderate or severe is that they often recovered from crashes, until they didn't.

 

[Rufous McKinney]

I experienced an intense worsening when I was gone for three months visiting my daughter. I never recovered from arriving (all the prep and travel and airport).

I saw all my symptoms get incredibly much worse. I DO have this tachycardia stuff and POTS stuff and gosh it was bad. I'd do nothing for many days, then I"d be unable to do the one fun thing on Sunday, too.

instead of being home alone (with the spouse, who is here but its like home alone at times)....I was with other people for breakfast, for lunch for dinner. Having to speak. My throat like strep at 2 pm daily.

It took like a year to sort of ditch those intensified symptoms.

Where I can't tell about damage or not damaged is due to being older. So the cognitive issues seem to just keep going. There is not much oxygen in the brain issue, etc.

 

[Shanti1]

Before I knew what was going on, I would push myself and crash. After successive crashes, my capacity to do things seemed to decrease after each crash, until it dawned on me that something was really wrong. Now, trying to avoid crashes, I seem to be holding steady.

 

[Rufous McKinney]

Before I knew what was going on, I would push myself and crash. After successive crashes, my capacity to do things seemed to decrease after each crash, until it dawned on me that something was really wrong. Now, trying to avoid crashes, I seem to be holding steady.

I agree with that approach.

My doctor got me Modafinil but I did not like it. Some other patient of his loves it. He describes that she uses it and then "crashes".

I saw how taking a small amount gave me a headache and it caused me to stop Pacing (clean the floor right now).

Figure we want our ATP to do the work to keep us going as much as possible .

 

[Rebecca under the papyrus]

For me a crash alone is not enough to lower the baseline or permanently worsen me in any other way. But if it comes together with other disturbing factors, I have a risk of decline.
When I was mild I still had no idea what a crash was, they were very mild, too. Then one day, together with a broken microbiome (antibiotics) and a persistent cold, I had the first dead-like crash of my life, and afterwards only recovered to my current moderate baseline.

 

[lenora]

I think crashes are individual to each of us. We can have mild ones, and more serious matters. Usually the holidays are guaranteed to lead up to a very serious one for me; sometimes even a weather change and who knows what I've done that day?

Sometimes when I expect a crash, it doesn't happen. I've had this for a long time and I'm still all over the map when it comes to having a crash. Stress, for sure, can provoke one, of that I have no doubt. I think so much of us it depends on the state our bodies are in at the time. Sometimes we're just more rundown and tired out than others.

You all know the feeling....things can just pile up. I hope you'll find an answer that will satisfy you. Yours, Lenora

 

[SpiralOut]

I agree with that approach.

My doctor got me Modafinil but I did not like it. Some other patient of his loves it. He describes that she uses it and then "crashes".

I saw how taking a small amount gave me a headache and it caused me to stop Pacing (clean the floor right now).

Figure we want our ATP to do the work to keep us going as much as possible .

This gives me some food for thought. I take a moderate dose of adrafinil (prodrug of modafinil) because I find it counteracts the all-day zonk-out that I get from the mirtazapine/diphenhydramine I take in order to sleep. It works well for that purpose while not seeming to counteract the fatigue as far as I can tell. However I wonder if it contributes to my tendency not to pace properly when not fully in a crash.

 

[christiankatz]

Before I knew what was going on, I would push myself and crash. After successive crashes, my capacity to do things seemed to decrease after each crash, until it dawned on me that something was really wrong.

This is what has happened to me. I was really pushing, not knowing it was detrimental, and I kept crashing. A couple summers ago, I tried going out for a walk each night for about 20-plus minutes. It was fun until I started wearing down. I was never able to get back to pre-walking condition.

We can't avoid life's big traumas, like deaths in the family and of friends. These have made me crash and never recover to pre-trauma condition. Also, surgery, losing a home to a flood, leaving a relationship have all contributed to my decline, and I haven't been able to recover from them.

So, I'd avoid any crashes you can.

 

[christiankatz]

My doctor got me Modafinil but I did not like it. Some other patient of his loves it. He describes that she uses it and then "crashes".

That stuff messed me up. It was like speed with a HUGE crash. Doctors keep recommending it for pwME.

 

[Rufous McKinney]

Doctors keep recommending it for pwME.

somehow we can't properly convey info in our doctor appointments. Mine are actually usually longer like 45 minutes, lucky me, and still I fail.

People who don't crash don't understand what crash is. We do, we can feel it ALL OVER.

"It results in crashes and crashes are not good." I needed to say that but somehow didn't.

My doctor was "trying to help me get thru an airport "(how he put it at the time)...and I never even took it on airport day. I'm too miserable already.

I'm a miserable traveler. I just do not travel well, it seems I never have.

 

[Rufous McKinney]

However I wonder if it contributes to my tendency not to pace properly when not fully in a crash.

I watched myself. Normally, I look down at the kitchen floor and am reminded of this challenge called cleaning it (I don't have a proper mop, that might help). I might decide to clean a small section. But I"d plan that out.

On the Modafinil, I fell to the ground immediately and just started scrubbing. It overrode Sickness Behavior.

also seem to hate head aches and it gave me one.

but mostly- I don't want to be alert to this illness. Being more alert to it isn't very helpful.

 

[SnappingTurtle]

With each crash in the last 2 years: I have slipped from mild-moderate activity level to moderate-severe, though I am only housebound, not bed-bound.

My ME/CFS doctor recently wants me to change how I pace. Evidently my previous efforts still resulted in my suffering through the dreaded push-and-crash cycle. The pacing is time-based, not task oriented. Reading through the borchure from UMHS 2003 Dr D A Williams and Dr M Carey, it seems to make sense, so I am giving it a try and might start my own thread about it. Here is a link where tou can read the article (but you have to pay to download): https://authorzilla.com/39LpW/chapter-2-behavioral-activation.html

 

[Shanti1]

So, I'd avoid any crashes you can.

Thank you @christiankatz, I am trying to be careful. I am still mild, occasionally dipping into moderate. Its those unexpected life-events that are tough, as you know.

 

[SnappingTurtle]

Here is a thread with link to study that concluded energy envelope approach is effective: https://forums.phoenixrising.me/threads/energy-conservation-envelope-theory-interventions.22098/

 

[SpiralOut]

Thank you for the links about pacing and the energy envelope, those are really helpful. I perhaps need to reevaluate how I do some things. Like I've devised a method of food preparation where I make four days' worth at a time, which takes 1-1.5 hours and generally crashes me for that day. It hadn't occurred to me to break it up with a rest but it sounds like doing so might be smart. Although when it comes to an activity like walking my experience has been that resting in the middle didn't seem to help? Walking 15 minutes each way to the opticians, for example, and sitting down for the appointment, has seemed to hit me just as hard as 30 minutes straight through. But perhaps doing eye stuff isn't all that restful.

 

[Rufous McKinney]

Like I've devised a method of food preparation where I make four days' worth at a time, which takes 1-1.5 hours and generally crashes me for that day.

this pacing is an odd thing and not always intuitive. I've flunked many many times.

Probably you need to take more breaks during this food prep thing. I will make myself go sit down in between stages.

The stool in the kitchen didn't prove terribly helpful, bothers my back if I'm having to stir. But at least I can just sit down there 1 minute here, 2 minutes there.

Or ten minutes or even 20 minute type breaks.

 

[Rufous McKinney]

When I was mild I still had no idea what a crash was, they were very mild, too.

mild for many decades, "crashing" per se wasn't noticeable. but I"d get real run down periodically and then sort of go into a run down state that I'd climb back out of eventually. I was actually fairly fit without being particularly aerobic (I'd go on Long hike with the dog or leap on boulders).

Thanksgiving dinner usually always wiped me out.

I recall staying up late one nite, a friend had a concert, and I leaned against a wall for several hours, came home at 1 am.

I got really wiped out by that event.

. I was really pushing, not knowing it was detrimental, and I kept crashing. A couple summers ago, I tried going out for a walk each night for about 20-plus minutes. It was fun until I started wearing down. I was never able to get back to pre-walking condition.

An attempt I launched to simply "walk around the block" three days in a row led to a 60 day crash that was deeply regrettable.

doing anything the day after doing anything is HUGELY contraindicated.

 

[SnappingTurtle]

If you experience worsening of symptoms or PEM within 3 days after the activity, then you did not reduce the time periods enough. Based on my 2 day CPET, it takes 4 mins to reach my Anaerobic Threshold (AT) on Day 1 (before PEM), but only 1 minute on Day 2 (when in PEM). So, for me, 4 minutes is my time interval. However, after I get over this bout of PEM, I will be using 8-10 minute activity intervals and breaks. Then, will adjust lower, if needed.

 

[hmnr asg]

Like many other people I only had small crashes when I was mild. For seven years I knew if I push myself too much I will only get a slap on the wrist by my crashes. Then one time, four years ago, I kept fighting through a crash. I pushed through a crash due to a job situation.

Since then I have become housebound. My life went from almost normal when I was mild to a complete disaster. Now I can't even shower without a shower chair or prepare food.

So yea, crashes are bad. When you are mild you may not realize this. It's like playing around train tracks. You may avoid getting hit by the train until the day you don't.