PEM from long car trip

Mel9

Senior Member
Messages
874
Likes
2,334
Location
NSW Australia
Returning to an old thread:

In the past six weeks I have had to make car trips to towns 2 hours, 4 hours and six hours away (a big mistake but I was trying to be agreable by being less hermit-like.)

Terrible PEM meant I was in bed for 1 day, 2 days and 4 days respectively.

So my formula seems to be one day of PEM for each hour of car trip, plus a bit more for really long trips.

@Stretched
@Wishful
@Wayne

Has anyone else experienced longer PEM for longer car trips?
 

Stretched

Senior Member
Messages
528
Likes
624
Location
U.S., Atlanta, GA
In the past six weeks I have had to make car trips to towns 2 hours, 4 hours and six hours away (a big mistake but I was trying to be agreable by being less hermit-like.)

Terrible PEM meant I was in bed for 1 day, 2 days and 4 days respectively.

So my formula seems to be one day of PEM for each hour of car trip, plus a bit more for really long trips...


Has anyone else experienced longer PEM for longer car trips?
Without a doubt... . I drove 300 miles to the beach for a week’s vacation - ended up spending that week on the couch, unable to go
anywhere. My very understanding wife had to spend the week mostly on her own. The drive back was with me in the passenger
seat - awful experience.

This is why I have come to view CFS as an intangible, like a feeling which is biochemical, i.e. in the brain. I think we all have this dynamic which is so far undiscovered in its piecemeal constituency. It’s like the reaction of a chameleon changing colors. It’s cause, though unknown as yet is likely a psychoactive state of mind, triggered by stress of some sort, likely inputted through the eyes, even though manifestations are physical.
 

Wayne

Senior Member
Messages
3,353
Likes
4,157
Location
Ashland, Oregon
likely inputted through the eyes
Hmmm, now that's a new one for me. Given my own sensitivities, and those of others on this forum, I certainly wouldn't discount it. I know I go into periods of time where I literally can't stand to see movement out of the corners of my eyes--can be quite discombobulating. I'd be interested in anything further you might have to say on the eye connection. -- Thanks.​
 

Wayne

Senior Member
Messages
3,353
Likes
4,157
Location
Ashland, Oregon
So my formula seems to be one day of PEM for each hour of car trip, plus a bit more for really long trips.
Hi @Mel9,

Interesting formula. I used to be able to drive fairly well, but that has dropped off significantly the past few years. I made a 150 mile round trip last year, and was fairly shocked to have PEM for most of the following week. I doubt I'll be doing that again anytime soon.

It seems it may be age related, but who really knows for sure. I remember when I was young and very much into physical fitness, I thought for sure I'd be active and in good health into my 90's. Who'd a thunk that early vision of my aging years would come tumbling down in such dramatic fashion?​
 

Moof

Senior Member
Messages
506
Likes
1,258
Location
UK
@Plum, I second what Mary says about BCAAs. In the UK, I find this brand good value, as it's the biggest dose it's feasible to take in one tablet (you can occasionally buy it from other sellers for slightly lower prices, e.g. eBay):

https://www.myprotein.com/sports-nutrition/bcaa-1500/10636967.html

They are quite large, so if you have trouble swallowing, maybe buy a smaller dose and take more of them. I've always been lucky that way, and can neck a handful of tablets/capsules at once. :)
 

Stretched

Senior Member
Messages
528
Likes
624
Location
U.S., Atlanta, GA
Hi @Mel9,

Interesting formula. I used to be able to drive fairly well, but that has dropped off significantly the past few years. I made a 150 mile round trip last year, and was fairly shocked to have PEM for most of the following week. I doubt I'll be doing that again anytime soon.

It seems it may be age related, but who really knows for sure. I remember when I was young and very much into physical fitness, I thought for sure I'd be active and in good health into my 90's. Who'd a thunk that early vision of my aging years would come tumbling down in such dramatic fashion?​
I’m in the same boat - getting older, formerly a fitness buff in earlier years pre-CFS.

As for my new theory of CFS, as posted elsewhere:
It (cause of CFS) May be a neurological rabbit hole difficult to explore because the science is so esoteric and complicated and neuroscientists have more pressing agendas. I wonder how many of them even take time to consider the nature of CFS relative to their specialized fields. Or, are they even aware of the problem, much of which has neurological correlations? Read that most crashes are preceded by stress to the brain in some manner. The stress input for the crash is through the eyes, physical (looking at efforts, work, stressors) or mental (reading, talking, exerting), i.e. anything that leads to a crash.

Many psychoactive drugs yield dramatic palliative results for the various stages of CFS, e,g. addressing cognitive issues, crashes and PEM. They, the various rxs can change the course of CFS, maybe not cure it, but make it tolerable, doable.

I would raise research banners around the various neurological camps. This calls for the classic paradigm shift in focus to research and funding in neuroscience. It seems reasonable that the time is right. Infectious disease stalwarts have for decades beat the same old drums looking for viruses, immune dysfunctions and mitochondrial disorders, and dietary experiments with little to no effective results. Why not work backwards from palliative drugs and explore how the mechanisms in the brain are affected by them? IMO, CFS and PEM are neurological events triggered by substance and/or process ‘X’.
 
Last edited:

Wishful

Senior Member
Messages
1,231
Likes
1,716
I told the OMF that I was willing to provide blood samples to find out why cumin blocks my PEM so effectively. One blood sample while suffering from PEM, one while having the expected PEM blocked by cumin; what's different? Seems simple and useful. Alas, no one seems interested.
 

Stretched

Senior Member
Messages
528
Likes
624
Location
U.S., Atlanta, GA
I told the OMF that I was willing to provide blood samples to find out why cumin blocks my PEM so effectively. One blood sample while suffering from PEM, one while having the expected PEM blocked by cumin; what's different? Seems simple and useful. Alas, no one seems interested.
FWIW, Methylprednilonone completely prevents PEM for me. I’ve tried black cumin but can’t really tell effect?
 

Wishful

Senior Member
Messages
1,231
Likes
1,716
Black cumin lacks cuminaldehyde, so I don't think it would work for me, and haven't bothered testing it.

@Stretched , does Methylprednilonone work reliably for you? Prednisone gave me pretty much complete remission the first two times I tried it, but then stopped working. Is it something you take daily, occasionally, or just took for one trial?
 

Stretched

Senior Member
Messages
528
Likes
624
Location
U.S., Atlanta, GA
Black cumin lacks cuminaldehyde, so I don't think it would work for me, and haven't bothered testing it.

@Stretched , does Methylprednilonone work reliably for you? Prednisone gave me pretty much complete remission the first two times I tried it, but then stopped working. Is it something you take daily, occasionally, or just took for one trial?
I’ve been taking it ~ a month. It works like a charm but I’m concerned about using it long term. I’ll likely take a break at the end of this tab package.
 

Wishful

Senior Member
Messages
1,231
Likes
1,716
I think my prednisone prescriptions lasted about two weeks each, so about a month overall. I don't know if Methylprednilonone is different, but I wouldn't be overly surprised if you found that it wouldn't work if you tried it again, or maybe the time after that. It's a case of 'don't know why it works, don't know why it stops working'.
 

Stretched

Senior Member
Messages
528
Likes
624
Location
U.S., Atlanta, GA
I think my prednisone prescriptions lasted about two weeks each, so about a month overall. I don't know if Methylprednilonone is different, but I wouldn't be overly surprised if you found that it wouldn't work if you tried it again, or maybe the time after that. It's a case of 'don't know why it works, don't know why it stops working'.
You’re probably right. It may be acclimation, e.g. like taking sleeping pills.
 

Stretched

Senior Member
Messages
528
Likes
624
Location
U.S., Atlanta, GA
Hmmm, now that's a new one for me. Given my own sensitivities, and those of others on this forum, I certainly wouldn't discount it. I know I go into periods of time where I literally can't stand to see movement out of the corners of my eyes--can be quite discombobulating. I'd be interested in anything further you might have to say on the eye connection. -- Thanks.​
See separate post, about 5 above, updated here to include, source the eyes.