Is PEM triggered by physical exertion the same as worsening triggered by sensory stimuli, cognitive exertion or emotions? What are the implications?

[Jonathan Edwards]

Is it just sunburn,

Yup. We use UV to study vascular activation this way. The skin goes red after a few hours, like sunburn.

 

[Jonathan Edwards]

Do we have evidence of puffy faces?

I haven't heard that other than from on for two members. Sleep and lying flat course make a face puffy from a combination of gravity and immobility.

 

[Sasha]

I find the physical effects of strong emotion very different from PEM. I try to keep my emotions steady because the effects are so unpleasant, but basically I get hit straight away. It's pole-axing.

 

[rvallee]

My experience is that the payback mostly relates to what 'system' has been overextended. I suffered a few major setbacks following significant physical exertion, from sensory stimuli and from cognitive effort, and they all seem to mostly affect those systems. Although they do all feature some overall deterioration, so there's still some 'shared root' element to it.

From overdoing physical exertion, I suffered mostly full-body exhaustion, weak/jelly muscles. A few times I was subjected to loud noises and it's what caused extreme sound sensitivity. It's farther back in time but from the time I was working, as a programmer so cognitively demanding, it manifested more as brain fog, headaches and mental confusion.

I think there's some localized effect happening depending on what gets exhausted. They are not entirely different but there is definitely a 'flavor' to it derived from what kind of effort lead to it.

I can't really speak to emotional exertion, it's not really something I can relate to other than not being emotionally available, not having the bandwidth, from PEM, whatever type it is. But I also have little wit, sense of humor and so on.

 

[Mij]

People with PEM tend to have puffy faces, puffy eyelids. I am pretty sure that ibuprofen reduces my symptoms - and it reduces pain and reduces swelling. I understand that it works on prostaglandins. Women seem to be likely to produce more prostaglandins than men.

I remember discussing this on a different thread. Don't astronauts suffer from 'puffy face syndrome"? Most likely zero gravity though.

I'm the opposite. My face is pale and sunken-in during PEM. It also occurs from being upright for too long. Once I lie down again my face goes back to normal.

 

[Mij]

Years ago I travelled 2hrs in a car and the next day I was exhausted- I could hardly lift my arms. I told my doctor and he said well holding the steering wheel can tire your arms- I was the passenger. Being upright for too long talking and vestibular effects was most likely the culprit.

 

[Hutan]

Do we have evidence of puffy faces? I'm not aware of any. Nor have I noticed it in myself in my daughter, though for myself I'm not in a fit state to look in the mirror in PEM.

I'm just going by what I and my son look like when in PEM, and the few photos I have seen of others in PEM.

Are we sure this is not sleepiness. Sleepiness with car vibration is surely something lots of people are familiar with.

I'm sure about very little these days. But, fatigue due to car travel as a result of constant small muscle adjustments was what I was told about years ago. If fatigue and/or PEM is the result of a high level of nerve synapse firings, or muscles working, perhaps that would help to explain why someone would have a bad reaction to being transported in a vehicle. It's not the same as lying in a bed or sitting in a chair that doesn't move.

 

[Eleanor]

Are we sure this is not sleepiness. Sleepiness with car vibration is surely something lots of people are familiar with.

Before I got ill, car travel always used to make me sleepy - a pleasant sensation as long as I wasn't the driver. Now it makes me tired-but-wired - the opposite of sleepy. Also dizzy, wobbly, verbally incoherent and with the sensation of continuing to move for hours afterwards.
(edited to add, this is just as a passenger - I can't drive any more)

 

[Nightsong]

Something else I've noticed is the (weak but still noticeable) correlation between OI & brain fog. Sometimes been very foggy-headed while sitting, & lying down for a short while will alleviate it somewhat.

Mechanistic investigations of OI have been quite limited - at present though we don't even have robust data on something as simple as cerebral blood flow. (Random thought: how far is the technology away from being able to do, say, arterial spin labelling in an upright MRI? Seemed the field strengths & homogeneity look insufficient & also seems the systems are not sufficiently able to compensate adequately for motion artifact, but not exactly something I know much about). Re ibuprofen cyclooxygenase inhibition is obviously the best known & understood mechanism of action - the one relevant to its analgesic effect - although if it was found to help some ME symptom it might be worth considering that it has some other, less understood effects - e.g. I think it has effects on the Rho kinase/ROCK signalling pathway as well.

Never noticed a puffy face despite spending a lot of time supine - although people who know me well can tell at a glance if I'm going to crash; I'm not sure which features make it obvious. Lying down feels somehow like my body's preferred state; I feel very strained sitting up. And car journeys are sensory hell.

 

[Hutan]

We use UV to study vascular activation this way. The skin goes red after a few hours, like sunburn.

The thing is, the effects of sunlight on skin appear to start with any exposure, even with just a few minutes of exposure, and there is a delayed reaction. Small fractions of the UVB dose that result in visible redness cause chemical changes. In that paper I linked above, there was a lot going on, prostaglandin production, up regulation of prostaglandin receptors, increase in intracellular calcium, increased COX2...

Those same changes could occur after the minor damage to muscles that can occur during physical exertion.
Also I read that prostaglandins act locally and are broken down quickly. So maybe they are hard to measure in people rather than skin cells in a dish.

I haven't been careful in making this idea, it's just an idea. But, I think there could be mechanisms that result in exposure to natural light causing (delayed) PEM in some people, in the same way that physical exertion can. It seems possible.

 

[Creekside]

This is the second time I've seen ibuprofen brought up recently, so on the off chance it's relevant, ibuprofen is basically the only med that reduces pain for me: headache, stomachache, sunburn, etc. Aspirin and acetaminophen do next to nothing. No effect on ME/CFS symptoms that I've noticed though.

I tried all three, and acetaminophen was the most effective for me for pain (headache, injury). As with you, no effect on ME symptoms. I think effectiveness of each one varies between people, so probably not relevant for ME. Do a poll if you like.

 

[Creekside]

I wonder if we wouldn’t have found a “cheat” medication that vastly increases your PEM threshold in that case.

Cumin (cuminum cyminum) had that effect for me. At least I think it is still possible to exceed my threshold for physical exertion and trigger PEM that way. While cumin seems to have "cured" my physically-induced PEM, I still get PEM from cognitive exertion.

See this thread: Personal experience of using cumin to treat PEM

 

[forestglip]

I tried all three, and acetaminophen was the most effective for me for pain (headache, injury). As with you, no effect on ME symptoms. I think effectiveness of each one varies between people, so probably not relevant for ME. Do a poll if you like.

Sure, do you think this wording would be good:

For those with ME/CFS: Of these painkillers, are any of them significantly more effective for your pain than the other two?
* Ibuprofen (Advil)
* Acetominophen (Tylenol)
* Aspirin
* No single painkiller stands out as better than the other two.

 

[Sarah]

It would be interesting to determine whether there is a correlation between the extent of orthistatic intolerance, disproportionate increases in heart rate on becoming upright, and symptoms of this sort in an individual, and a propensity to develop PEM from triggers like sound sensitivity and emotional stressors, as these (and perhaps other things mentioned) may naturally cause an increase in heart rate (for example, if there were ongoing sound that a pwme was unable to cope with the level of), but would cause a disproportionate increase in heart rate in those susceptible, which would presumably in a sense constitute exertion without the physical activity. If that makes sense at all.

If an individual has OI, disproportionate heart rate increases and related symptoms but limited or no sound sensitivity (for example) they perhaps wouldn't be aware that they would be affected in this way by sound if they were more severe. I tend to think that perhaps sensory sensitivities aren't always so obvious in less severe ME, so perhaps some individuals think they don't have them (or certain other symptoms) but at a more severe level they may start to become apparent.

 

[Creekside]

As best as I remember, (given ME), my cognitively-triggered PEM symptoms were the same as for physically-triggered. The main difference was that physical triggering had a consistent 24 hr delay, while cognitive activity could trigger in less than an hour, and the delay varied more (could take more than an hour). Hmmm, the last two trips into town involved actual chatting with people, and didn't trigger noticeable PEM, whereas it would have before. Something changed?

 

[Ash]

Sure, do you think this wording would be good:

For those with ME/CFS: Of these painkillers, are any of them significantly more effective for your pain than the other two?
* Ibuprofen (Advil)
* Acetominophen (Tylenol)
* Aspirin
* No single painkiller stands out as better than the other two.

Would this need to be any pain or an ME related PEM pain?

For me the following is how it works, as recommended by multiple pharmacist’s;

Asprin soluble form for sore and swollen throat including lymph nodes. Also can help with fever.

Ibuprofen for inflammation and injury or muscle over use.

Paracetamol for headaches feeling feverish and flu pain, closest to ME malaise.

 

[Creekside]

Sure, do you think this wording would be good:

Looks good. We'll leave out the weird alternative methods that have strong vocal proponents but no clinical evidence.

 

[Spartacus]

I have found that my cognitive symptoms deteriorate more with emotional or sensory exertion. Whereas, my pain levels increase more if I have physical exertion. I am currently dealing with the police a lot, as my husband has acquired a female stalker. I am not exerting myself physically at all, but it is a very stressful situation. Yet I notice I am suffering from severe dizziness, difficulty focusing my eyes and worsening of brain fog. My OI is also worse. Pain levels are the same though.
I don't recommend having to deal with the police! Not a good experience for someone with ME. Having to do something like this has made me realise how disabled I am.

 

[Creekside]

The poll should make it clear that it's for ME pain or non-ME pain. None of the regular painkillers worked on my ME pain, but LDN did. Maybe two separate questions, or two separate polls? Also, maybe include an invitation to report any alternative that did work for that person.

 

[Creekside]

It would be interesting to determine whether there is a correlation between the extent of orthistatic intolerance, disproportionate increases in heart rate on becoming upright, and symptoms of this sort in an individual, and a propensity to develop PEM from triggers like sound sensitivity and emotional stressors, as these (and perhaps other things mentioned)

In another thread I said this:

It's too bad our symptoms are so hard to clearly define. Otherwise we could build a database of specific symptoms and responses to factors, and treatments that worked for each combination, or factors that needed to be avoided. In my 20+ years of ME, I've stumbled across several treatments that worked really well for me, but haven't worked for anyone else. Is there some pattern in factors that might indicate who else it might work well for?