An observation from someone as they recover, about what PEM is

[TexRob]

I'm for better or worse, very in tune with my body. There are many "kinds of intelligence", and I think one that I am uniquely good with, is noticing trends and patterns. So I want to share my thoughts, maybe they aren't new or unique, but here we go.

When your body is deficient and/or the nervous system isn't functioning properly, it's like our heart just runs at the same speed most of the time. It elevates when you exert, but not in a very normal way, it feels instant and not metered. I never really noticed this, until I started to feel better these past few days, after years of this. All of a sudden I am finding that if I move too fast, my heart starts really racing and I start breathing heavier, whereas before, it was just like I was a generator running at max RPM, instead of throttle controlled, to use an engine analogy. I then realized, oh, when our nervous system isn't functioning properly, those messages to slow down don't really get sent, you don't really feel that you're pushing, because it kind of always feels a struggle. That's how we over-exert, because we don't have a normal response to where that barrier of energy is, and for us it's very low. I'm finding I really need to pace myself as I recover, because this is such a new/old feeling, it's easy to get excited. I feel like old systems are coming into action and it's all a bit overwhelming, but mostly in a good way.

 

[Rufous McKinney]

Im curious:

do you yawn?

stretch?

I watch this healthy baby do these things, but my body does not do these things.

and for us it's very low

Yes. But what explains it being so very low?

Since you're experiencing a recovery, it would make sense you would have to constantly pace. Presumably you're massively deconditioned, if nothing else. Seems like you would need to be very very careful.

Just the joints, for instance.

I am again simply shocked at how remarkable a Major Crash can be and how very little it takes.

 

[TexRob]

Im curious:

do you yawn?

stretch?

I watch this healthy baby do these things, but my body does not do these things.



Yes. But what explains it being so very low?

Since you're experiencing a recovery, it would make sense you would have to constantly pace. Presumably you're massively deconditioned, if nothing else. Seems like you would need to be very very careful.

Just the joints, for instance.

I am again simply shocked at how remarkable a Major Crash can be and how very little it takes.

Oh man, I love when people talk about these weird symptoms. I really want to do a head to toe deep dive where I list every little thing (tooth pain, eye pain, jaw pain, mouth ulcers, neck pain) and that's not even going below the neck.

So yes, now all of a sudden I am yawning, and I think I said it somewhere, I need to stretch yes. When I am off, as in, for years pretty much (with some little instances here and there) I basically don't feel the need to stretch and it's like it does no thing. Same with yawning, I might yawn before, but for one, my eyes would NOT water, and it didn't feel like I got the oxygen that a yawn is trying to get. Now in the past few days, yawn city, it's weird enjoying such strange "normal" things.

As for us being low, I don't know friend, for you, but I can tell you pretty confidently why for me after what I've learned in the past week. I think this video does the best job of showing how the pillars of the breakdown create cycles.

I am/was on SSRIs. I would feel terrible, so I would take NSAIDs. Even before that though, I had a c diff infection for almost 2 years, and that meant diarrhea for almost 2 years. This was resolved in 2018 with a fecal transplant, but I believe that's where I was in the hole, so to speak, from that experience. On top of that, I ate a low thiamine diet, and a highly processed diet. As things would get worse, I and many others thought I had SIBO, so I would cut out cereal and bread, which might have been my last two sources of thiamine. It's just a perfect storm of things that can and did happen for me and others, I think. You don't need all the factors, but the more the worse it can be.

Oh, and finally, and this is a big one that is an entire other rabbit hole for people to go down, but my exposure to Epstein Barr Virus is not something to be glanced over. Research has shown it's a viral disease that attacks the genome. It rewrites part of your DNA, so that's where I think I must have picked up this thiamine deficiency at around age 18, now 45. I am getting Circle Premium done soon I think, for the medical DNA stuff.

 

[TexRob]

I did not realize I had this for so long I didn't know about the crash, I constantly crashed to the point where I guess I just almost got used to it, or I was just "crashed" all the time at my lowest. Now that I am recovering some, I am finding that the crash barrier is still not far off, but now my nervous system is warning me and I have to take a breather and calm myself down so as to not overdo it. So much of this feels like function restoring, and progress is amazing to feel. I really hope you try the treatment.

 

[hapl808]

I got used to the crash and it just became a part of normal life. I never 'believed' in PEM because my onset was so obviously after some pathogen in a SE Asian country, so I used to read the forums here for specific ideas but always avoided the 'I had a PEM crash because I watched TV' threads because they seemed ridiculous to me when I was more moderate and not affected that badly.

Sure I'd crash after a single day of work, but I just dealt with it and pushed through. For me that was a crappy solution that worked...until it didn't work. First major crash after 40 and I just stayed severe, with a few minor up and downs within that envelope for various reasons.

So eventually I found myself 'one of those people' who just doesn't seem to get better. Currently in what I would call about an 8 year crash and while I've learned to cope, I don't think I've significantly improved in that period and possibly gotten worse. For the first 3 years my crashes were maybe more from attempts at physical exertion, although in retrospect my crashes are delayed and I probably just didn't notice when it was from cognitive things. I used to be obsessed with diet because I have a lot of GI symptoms, but I've learned that if I don't exert myself cognitively or physically, then my GI symptoms get much better because I'm not crashing constantly.

Oh well.

 

[Rufous McKinney]

tooth pain, eye pain, jaw pain, mouth ulcers, neck pain

are we twins separated at birth?

 

[Rufous McKinney]

I think this video does the best job of showing how the pillars of the breakdown create cycles.

thanks for posting these videos, I really want to watch them and will. After this major ACUTE crash calms down...

 

[TexRob]

thanks for posting these videos, I really want to watch them and will. After this major ACUTE crash calms down...

I get this so much. For me, they are able to get my brain going, but I've also learned that that can lead into what my next reply is

I got used to the crash and it just became a part of normal life. I never 'believed' in PEM because my onset was so obviously after some pathogen in a SE Asian country, so I used to read the forums here for specific ideas but always avoided the 'I had a PEM crash because I watched TV' threads because they seemed ridiculous to me when I was more moderate and not affected that badly.

Sure I'd crash after a single day of work, but I just dealt with it and pushed through. For me that was a crappy solution that worked...until it didn't work. First major crash after 40 and I just stayed severe, with a few minor up and downs within that envelope for various reasons.

So eventually I found myself 'one of those people' who just doesn't seem to get better. Currently in what I would call about an 8 year crash and while I've learned to cope, I don't think I've significantly improved in that period and possibly gotten worse. For the first 3 years my crashes were maybe more from attempts at physical exertion, although in retrospect my crashes are delayed and I probably just didn't notice when it was from cognitive things. I used to be obsessed with diet because I have a lot of GI symptoms, but I've learned that if I don't exert myself cognitively or physically, then my GI symptoms get much better because I'm not crashing constantly.

Oh well.

I get this big time. I think you hit the way to describe it really well. It sounds like some brag when you say "I was crashed all the time", but I didn't get it is what I am really trying to convey. As I've started to recover these past few days, I am able to feel the crash barrier all of a sudden, but it's easy to ignore. I spent a LOT of time on here and on Reddit yesterday and had to make myself detox a bit, I was overwhelmed last night and overdid it.

are we twins separated at birth?

It feels good to know that, because it means there is hope for you as I see it. I even left off some stuff and didn't even make it below the neck. I have weird face things, that made me thing I had Lupus for a long time. I have like Keratosis or something in a few spots, mostly hidden by my beard, but one looks like a big birth mark on my beard line.

I'm gonna jump to another body part for a second, but this one was a weird one I wanna see if anyone else has. In addition to seemingly losing hair wherever fat deposits (means my shins still have thick hair) from perhaps inflamation, on the outside of my legs, below my knee and above my ankle, where it used to be hairy, it was like permanent goosebumps. My wife said it has a name, and I could look it up, but it was like little prickly things 24 hours a day. Where it gets weirder is I'm on day 6 of treatment, and that is gone, and tiny little hairs are there, I kid you not.

 

[lenora]

Stretching and yawning must be a form of exercise and awakening the body.

Years ago I read that Martha Graham, founder of Modern Dance, spent a great deal of time ill. By watching her cat she noticed that it stretched and yawned a lot....and began to do the same thing herself. Perhaps it is a primitive form of exercise for those who can't just swing their legs....I don't know.

However, I found it interesting (and this was long before I knew I was ill) and filed it away. I think I'll pull that file card out and use it (long, long before computers). Perhaps there's something new to be remembered in this world after all. Stretch away! Yours, Lenora

 

[TexRob]

Stretching and yawning must be a form of exercise and awakening the body.

Years ago I read that Martha Graham, founder of Modern Dance, spent a great deal of time ill. By watching her cat she noticed that it stretched and yawned a lot....and began to do the same thing herself. Perhaps it is a primitive form of exercise for those who can't just swing their legs....I don't know.

However, I found it interesting (and this was long before I knew I was ill) and filed it away. I think I'll pull that file card out and use it (long, long before computers). Perhaps there's something new to be remembered in this world after all. Stretch away! Yours, Lenora

Oh absolutely. I do want to circle back to be clear, so it's clear what Rufous and I are describing. I could do the act of stretching, when my body was severely dysfunctioning, and it didn't do anything. You didn't feel that pull in your muscles. I think it must be a hydration issue, for me I think that's what it is. Even though I drank tons, I was always dehydrated. I have proof of this, drinking 80-100oz of water a day and going into the hospital last year and needing FIVE liters of fluid. I'm 6ft around 220lbs.

As for yawning, I think that's just a breakdown of the autonomic nervous system, and is the same reason my GI tract shut down, etc. I was always tired, but yawning is a reflex action to say "more oxygen", but when the nervous system isn't functioning, it doesn't really trigger. I am now yawning like 5 times back to back, as things start to restore, and my eyes will water, something that also didn't happen before.

 

[Rufous McKinney]

The other night I suddenly started yawning and yawned about twenty five times. My daughter witnessed. It was really odd.

 

[TexRob]

The other night I suddenly started yawning and yawned about twenty five times. My daughter witnessed. It was really odd.

Does that mean you started a treatment? or just recovering from your PEM?

 

[Rufous McKinney]

Does that mean you started a treatment?

unrelated to anything I was doing....I had this abrupt massive one off, yawn session. Can't really explain it. And it hasn't happened since.