PEM delay, paralysis, and reflexes

[barabara]

I read that in CFS, PEM usually kicks in several hours post-exercise.

If I exercise, I feel a normal variety and type of fatigue afterward. But several hours later, a type of paralysis slowly kicks in. A good starting sign is sudden snorts for air and breathlessness from moving. Then I become completely paralyzed for 30-90 minutes, and feel weak after that.

I also have hyperreflexia while this is happening. What kind of reflexes (knee jerk) do you have while fatigued?

A mild form of this is „brain fog”, or zoning out not doing anything, so I think PEM in my case is some sort of energy depletion following exercise. I wonder why at least some people with CFS have delayed PEM. It may be a clue as to the cause of it.

 

[Wishful]

My reflexes don't seem to change when fatigued or in PEM.

My physically-induced PEM had a very consistent ~24 hr delay. My cerebrally-induced PEM had a shorter (within an hour) and more variable delay. I think my physically-induced PEM may have been due to IFN-g, which is known to rise 24 hrs after exertion.

 

[wyva]

My reflexes don't seem to change when fatigued or in PEM.

My physically-induced PEM had a very consistent ~24 hr delay. My cerebrally-induced PEM had a shorter (within an hour) and more variable delay. .

This is how it is for me exactly. My physically induced PEM typically lasts for 2 days and it always starts the next day after the activity. The cerebrally induced one is also similar to yours.

I wouldn't say I've ever felt paralyzed but in my worst first years my fatigue felt like being sedated, like being injected with tranquilizer. It felt absolutely like something external, not my own fatigue at all. It was a very abnormal feeling and as I said it did feel like someone injected me with some sedative. I'm not sure if you feel the same, just in a much stronger way @barabara or it is something different.

 

[Zebra]

Hi, @barabara!

First, I'm sorry this is happening to you!

Second, I'm wondering if this thread might be of interest to you:

https://forums.phoenixrising.me/threads/episodic-paralysis-low-potassium-may-be-an-issue.81030/

 

[Haley]

I also have hyperreflexia while this is happening. What kind of reflexes (knee jerk) do you have while fatigued?

I have hypereflexia at the best of times, but it goes into hyperdrive when I'm in a crash. No idea why. An integrative Dr I once saw told me to increase my magnesium intake to help it.

 

[barabara]

My reflexes don't seem to change when fatigued or in PEM.

My physically-induced PEM had a very consistent ~24 hr delay. My cerebrally-induced PEM had a shorter (within an hour) and more variable delay. I think my physically-induced PEM may have been due to IFN-g, which is known to rise 24 hrs after exertion.

Why not get a blood test for IFN-g in a fatigued state and confirm that theory? Since my attack is so sudden and has a delay, I wonder if cytokines could be involved.

People with CFS had low ESR, which suggests low inflammation, whereas people with other autoimmune diseases have high ESR. I had ESR on the low side of normal, but I have doubts that I have CFS since my functioning goes up and down and responds to rest.

What else may increase during PEM in CFS that people could get tested for?

 

[xebex]

My thoughts are it takes 24 hours for the immune system to respond to exercise/ activity and when it does, it responds inappropriately causing PEM. But weirdly, over time, my delay has got shorter and shorter (and my recovery is shorter too) I’m back to baseline quicker even though my function hasn’t changed that much.

 

[Wishful]

It felt absolutely like something external, not my own fatigue at all

Yes, I don't consider what I feel from ME to be fatigue; it's something fatigue-like. It did feel like I'd been drugged.

 

[Wishful]

Why not get a blood test for IFN-g in a fatigued state and confirm that theory?

Too late. I've accidentally cured my physically-induced PEM, via cumin. I still get the 'drugged' feeling from cerebrally-induced PEM, and I get brainfogged from something in high-protein foods, but I think neither of those symptoms involved IFN-g, and don't have that 24 hr delay. Getting unusual blood tests done here in the Canadian medical system is difficult, and getting tests done promptly is difficult in rural areas.

 

[barabara]

Too late. I've accidentally cured my physically-induced PEM, via cumin. I still get the 'drugged' feeling from cerebrally-induced PEM, and I get brainfogged from something in high-protein foods, but I think neither of those symptoms involved IFN-g, and don't have that 24 hr delay. Getting unusual blood tests done here in the Canadian medical system is difficult, and getting tests done promptly is difficult in rural areas.

What are your thoughts about CFS being due to an excess of serotonin? There were reports of people curing themselves by taking cyproheptadine for months to years. High-protein foods provide tryptophan, which can be used to make serotonin, and gelatin is the type that doesn’t have it, so I wonder how you’d respond.

Serotonin is a brain-shutoff neurotransmitter, and the paralytic episodes and brain fog seem like an unnatural form of shutoff unrelated to actual fatigue.

I may try cyproheptadine again. I never stay on it long because results don’t appear in a short period of time, so I stop taking it.

What mechanism does cumin have and what’s your experience with it?

 

[xebex]

based on my experience serotonin increasing supps and activities can make me sleepy or even crash. So I think its a valid theory.

 

[Ladycreole03]

My cerebrally-induced PEM had a shorter (within an hour) and more variable delay.

W× there's different ones? Can you explain the cerebral one?

 

[Wishful]

W× there's different ones? Can you explain the cerebral one?

The symptoms are the same; it seems it's just triggering via a different route. I believe that physical exertion triggers PEM through the immune system. I know that physical exertion triggers IFN-g release a fairly consistent 24 hrs later, and that seems to fit observations.

PEM can also be triggered by certain cerebral activities. For me, driving--especially under stressful conditions, such as driving at night on icy roads--and socializing are fairly reliable triggers for PEM. I haven't experienced it enough to determine what variables affect delay and severity, but it's not as consistent as physically-induced PEM. My (admittedly vague) hypothesis is that cerebral exertion triggers the same cellular abnormalities directly as cytokines from physical exertion do indirectly.

the symptoms I'm presently getting from something in protein-rich foods is very PEM-like, so maybe there's a third trigger for PEM.

 

[Ladycreole03]

The symptoms are the same; it seems it's just triggering via a different route. I believe that physical exertion triggers PEM through the immune system. I know that physical exertion triggers IFN-g release a fairly consistent 24 hrs later, and that seems to fit observations.

PEM can also be triggered by certain cerebral activities. For me, driving--especially under stressful conditions, such as driving at night on icy roads--and socializing are fairly reliable triggers for PEM. I haven't experienced it enough to determine what variables affect delay and severity, but it's not as consistent as physically-induced PEM. My (admittedly vague) hypothesis is that cerebral exertion triggers the same cellular abnormalities directly as cytokines from physical exertion do indirectly.

the symptoms I'm presently getting from something in protein-rich foods is very PEM-like, so maybe there's a third trigger for PEM.

I agree, because I was just sitting at one point and something would trigger an adrenaline burst. Movement from looking at something and then I get PEM. This was before I knew what I had.