Why might exercise help me?

[Fighttolive]

I played volleyball for 2 years without too much issue then moved to Canada, basically lived a normal life for about 6 years, ME was very mild, i would crash after an intense bike ride or intense amount of skiing i knew there was something wrong but i could basically live as normal. I even entered some downhill races and won one of them! But then 5 years ago i had a miscarriage, and i'm not sure if its related but i very slowly started to get worse, stated getting crazy sore throats and losing my voice, and then i wasn't recovering well after a weekend of teaching english online, it would take all day Monday to recovered form essentially just sitting in my room chatting to people online, then we renovated our house, and shortly after that I crashed into moderato/severe. I believe the stress of the reno combined with the off gassing of the new materials is what did it. However I do believe the initial insult was way back years before, and my immune system was just waiting for a hit to take me down.

I am hoping there is a sunrise for you again.

I sort of have been living as if I have an expiration date- to do the things I enjoy knowing they might permanently send me to a invisible grave ...sigh, hopefully we can get back to our regular bad again

 

[Wishful]

I wondered if maybe my blood is thick or something or doesn’t reach my brain properly unless I do some cardio based stuff haha

That's actually plausible. Studies have found PWME not getting adequate blood flow through the smallest capillaries. Higher heart rate, pressure, and movement might improve that.

do you take any supplements? Was thinking if Curcumin

Only an occasional VitC tablet, since I don't get enough in my diet. I never had any noticeable benefits from daily supplements. I took cumin (cuminum cyminum) every three days to block PEM, but I considered that a chemical treatment rather than a supplement. since cuminaldehyde isn't something with an RDA.

I could do strenuous exercise but then a car drive on a certain day it would trigger PEM, but just last week I could drive to airport and back (5hours) it’s so damn random.

Driving can trigger cerebrally-induced PEM. For me, the intensity of this PEM correlated with the stress or cerebral exertion of driving. An easy drive in good conditions might not trigger it, but driving on an icy road in dark, snowy conditions triggered quite severe PEM. Heavy traffic requires more cerebral processing or all the sensory data. Maybe your 5-hr drive was in good conditions while some PEM-triggering drives were in bad traffic or bad driving conditions? Other factors (diet, physical exertion) may also affect it, to confuse matters.

 

[Wishful]

@Fighttolive , another possibility to think about is that many PWME have spinal/CCI issues. Maybe your martial arts or other activities does something to minimize some sort of problem there. Just a small chance, but pay attention to head/neck movement, and see whether it correlates with your symptoms. For example, maybe the drives that do or don't trigger PEM differ in the amount of head turning you do while driving.

Also, when looking for correlations, keep in mind that physically and cerebrally induced PEM involve different mechanisms, so think of them as separate problems. My physically-induced PEM had a consistent 24 hr delay, whereas my cerebrally-induced PEM had a more rapid and variable delay, sometimes under an hour. Also, cumin blocked my physically-induced PEM but didn't block my cerebrally-induce PEM. My hypothesis is that physical exertion triggers PEM through immune system activation (which has a delay; 24 hrs for IFN-g) which eventually triggers the PEM mechanism in the brain. Cerebral exertion triggers the neural PEM mechanism directly.

 

[Fighttolive]

@Fighttolive , another possibility to think about is that many PWME have spinal/CCI issues. Maybe your martial arts or other activities does something to minimize some sort of problem there. Just a small chance, but pay attention to head/neck movement, and see whether it correlates with your symptoms. For example, maybe the drives that do or don't trigger PEM differ in the amount of head turning you do while driving.

Also, when looking for correlations, keep in mind that physically and cerebrally induced PEM involve different mechanisms, so think of them as separate problems. My physically-induced PEM had a consistent 24 hr delay, whereas my cerebrally-induced PEM had a more rapid and variable delay, sometimes under an hour. Also, cumin blocked my physically-induced PEM but didn't block my cerebrally-induce PEM. My hypothesis is that physical exertion triggers PEM through immune system activation (which has a delay; 24 hrs for IFN-g) which eventually triggers the PEM mechanism in the brain. Cerebral exertion triggers the neural PEM mechanism directly.

Yes! This is exactly how I feel, but why would the two mechanisms that trigger PEM be different?

also I understand that theory and I definitely have three bulging discs in my neck and when I was young had a history of severe migraines that led to vomiting which I now believe or cervicogenic headaches, there was definitely some neck involvement

however my onset it seems to have been viral so I don’t know how the virus can change your neck

Did the Curcumin you use effectively block PEM?

yes I get PEM from complex tasks, if I go to hard into them, having to deal with difficult people, in person negotiate things like that, however creative pursuits like writing a script or developing a brand logo or something I have no problem

what’s your activity level you sound very similar to me?

 

[Fighttolive]

Also do you have any information on where I might find that blood theory?

 

[Wishful]

but why would the two mechanisms that trigger PEM be different?

I think of it as PEM being a certain biological mechanism in the brain. There's no reason why it couldn't have more than one triggers. I think PEM might involve neurotoxic kynurenines, so there are various ways for levels of those to rise.

however my onset it seems to have been viral so I don’t know how the virus can change your neck

The virus wouldn't need to change your neck. It could change neural responses to signals passing through your neck, so instead of ignoring the effects of CCI, your brain would become oversensitive to them. Alternatively, the virus could change cellular function in your neck. Maybe viral infection in those cells prevents normal repair/replacement of cells, or hampers some other function of them. Changes needn't be obvious (physical bulging or whatever) to cause symptoms elsewhere.

Did the Curcumin you use effectively block PEM?

Cumin (cuminum cyminum), not curcumin. Yes, cumin very effectively blocked my PEM, and seems to have completely cured it. See: https://forums.phoenixrising.me/threads/cumin-cuminum-cynimum-possible-pem-blocker.56232/

Socializing is a major trigger for cerebral PEM for me. Even a brief exchange of words with a cashier seems to be enough to trigger PEM, though it's hard to be sure, since such exchanges also involve driving to/from town. Phone calls were bad too, back when I had a phone. Some reasonably strenuous cerebral activities, such as solving a computer problem or analyzing an electronic circuit, don't trigger PEM.

For ME and blood flow, google "me/cfs blood flow" and also "red blood cell deformability me/cfs". Follow through to whatever level of research papers you can manage.

 

[Fighttolive]

I think of it as PEM being a certain biological mechanism in the brain. There's no reason why it couldn't have more than one triggers. I think PEM might involve neurotoxic kynurenines, so there are various ways for levels of those to rise.



The virus wouldn't need to change your neck. It could change neural responses to signals passing through your neck, so instead of ignoring the effects of CCI, your brain would become oversensitive to them. Alternatively, the virus could change cellular function in your neck. Maybe viral infection in those cells prevents normal repair/replacement of cells, or hampers some other function of them. Changes needn't be obvious (physical bulging or whatever) to cause symptoms elsewhere.



Cumin (cuminum cyminum), not curcumin. Yes, cumin very effectively blocked my PEM, and seems to have completely cured it. See: https://forums.phoenixrising.me/threads/cumin-cuminum-cynimum-possible-pem-blocker.56232/

Socializing is a major trigger for cerebral PEM for me. Even a brief exchange of words with a cashier seems to be enough to trigger PEM, though it's hard to be sure, since such exchanges also involve driving to/from town. Phone calls were bad too, back when I had a phone. Some reasonably strenuous cerebral activities, such as solving a computer problem or analyzing an electronic circuit, don't trigger PEM.

For ME and blood flow, google "me/cfs blood flow" and also "red blood cell deformability me/cfs". Follow through to whatever level of research papers you can manage.

We’re you astute at electronics prior to ME and less social?

I was the opposite- most social interactions don’t cause PEM, but analyzing electronics in mathematics would probably crash me, I wonder if it has to do with the process of memory recall or some thing

 

[Fighttolive]

Oh yes! I remember reading about you in the cumin, I suppose I will try some in a supplement form

 

[Wishful]

I was the opposite- most social interactions don’t cause PEM, but analyzing electronics in mathematics would probably crash me, I wonder if it has to do with the process of memory recall or some thing

I think ME affects different parts of the brain in different people. Maybe it correlates with the parts that you developed most/least strongly, or maybe it's just random. The important thing is to figure out what cerebral activities trigger your PEM.

You can try cumin in expensive nutraceutical form, but it's possible that they use a variety low in cuminaldehyde. The cheap no-name ground cumin in the spice section of the grocery store worked well for me. I think it was under $2.

 

[purplelady]

I am hoping there is a sunrise for you again.

I sort of have been living as if I have an expiration date- to do the things I enjoy knowing they might permanently send me to a invisible grave ...sigh, hopefully we can get back to our regular bad again

low intensity exercise