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PENE crash and muscle pain

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by rvallee, Jun 19, 2019.

  1. rvallee

    rvallee Senior Member (Voting Rights)

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    I have seen some discussions here and there around the puzzling fact of muscle pain being a consequence of neural exhaustion, whatever that actually means in pathophysiology, but not within a formal thread.

    It's not quite clear how much distinction there is between PEM and PENE. Maybe they are the same, just brought about by different mechanisms. For the purpose of this discussion I differentiate between effort (physically doing too much) for PEM and stimuli (here being noise) for PENE. Maybe they all mean the same, but it's the difference between doing something leading to a crash and being subjected to stimuli leading to a crash.

    I am coming down one such episode, a complete neural exhaustion brought about by excessive noise. It was a relatively typical crash, although when noise is the cause I always find a more pronounced increased noise sensitivity then when it comes from physical effort. But it's distinct in the fact that I did not personally make particular physical effort at all, which is the usual cause of a PEM crash for me.

    And in that relapse, I had high muscle pain, particularly in the legs, thighs and calves mostly, as well as the damn hanger coat pain and at the base of the skull. It's remarkable that in recovering from that crash (to my previous baseline, not an improvement) the muscle pain has come down pretty much along with noise sensitivity. The muscle pain was relieved a bit by massaging several times a day. Not great but it definitely helped a bit.

    Muscle pain and noise sensitivity are both still present, but their intensity followed remarkably well. And this is quite a puzzle. How can something like neural exhaustion (again a hard concept to define but one most here would be familiar with) lead to muscle pain? I had many of the usual increase in other symptoms as well, especially difficulty with movement. I was basically moving like a sloth, very calculated, strained, in order to do the most basic things. As if I was a rusted out metal machine.

    I also had high neck, spine, head and facial pain, especially the trigeminal nerve and base of the skull. Pain that is hard to relieve with normal painkillers. It all came down along with. Still there, just back to their usual self 2-4/10 instead of being a 7-8/10 on the pain scale during the relapse.

    I don't know how we can make something useful out of it but this is clearly a thing that isn't subject to much research and frankly only we can make some sense of it. I just don't know how but discussion is always a good start.
     
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  2. Mij

    Mij Senior Member (Voting Rights)

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    @rvallee I'm sorry you're going this. Do you wear ear plugs? What exactly is 'neural exhaustion'? Does it include mental fatigue/exhaustion?
     
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  3. dangermouse

    dangermouse Senior Member (Voting Rights)

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    Interesting. I’m similar with sound sensitivity currently, but I’ve also got PEM. I have the awful coat hanger pain and very painful hips.
     
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  4. duncan

    duncan Senior Member (Voting Rights)

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    I lump them both under exertion PEM, but maybe you are right and they are distinct, @rvallee .

    Sound sensitivity appears to be a trigger for you. Perhaps it's the noise in and of itself, or might it be you focusing on the noise? For me it's the focusing that can be my undoing. Concentrating. And yes, it elicits a sort of different PEM than doing too much physically, but I cannot put my finger on it.

    The concentration thing for me isn't so much pain as it is like feeling poisoned - like I had too much acid in me, and not the cool 60's kind. It does not qualify as pain usually, but it is unpleasant enough for me to limit concentrating too long or too frequently. That means reducing my exposure to things like drives in a car (as a passenger), reading studies, longish conversations etc.

    They cannot properly investigate this, I fear - not yet in any meaningful objective way that is broadly accepted and would be universally unchallenged. They keep throwing darts at interpreting MRI's and PET scans and denying SPECT scans whenever they can. Brain imaging seems to me pretty much a Tower of Babel, unless they are looking at foreign growths and the like. Dyes are great and all, but it's the power of inference I fear neurology is wanting in.
     
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  5. rvallee

    rvallee Senior Member (Voting Rights)

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    I'm pretty much back to my "normal" so I'm relatively OK now as far as noise is concerned. The noise was mostly my parents being careless and it seems they got it this time. I'm getting a little changes done in the house to reduce the noise and them being more careful about it, at least for a while.

    Neural exhaustion... now that's mostly just a placeholder term, I guess. I've seen plenty use it and it's at least moderately useful in explaining. It's when your senses can't take any more of anything, whether it's noise, light, thought, smell, movement. I liken it to a scratch that you just keep on scratching and again and again until even just blowing air on it hurts because the nerves are so raw with pain that they can't take anything, they are at the maximum sensitivity level and anything just makes them scream, just everywhere all at once.

    I used it because PENE, post-exertional neural exhaustion, is sometimes used by some to describe this similar but not quite identical state to PEM. It's probably not quite accurate but there are only so many ways one can describe something that is not understood, like trying to describe the color red without being allowed to use the word red, it can't be entirely accurate but you can at least worm your way close to it.

    It's either similar or a component of PEM, but as far as I can tell it hasn't been subject to any research at all since it is so bizarre and subjective that only someone who has experienced it can even make sense of what it means.

    I think there is value in testing it, as an alternative to the physical exertion used to trigger PEM. It would work great for imaging research, where you could subject a patient to noise (and light) overstimulation and try to catch the effect in the act. I think there is potential there.
     
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  6. rvallee

    rvallee Senior Member (Voting Rights)

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    Makes no difference. If avoiding it made a difference I would be fine, The worse is with noise that bangs, clangs or however one can describe a hard-hitting noise. Doors slamming, something heavy dropping, metal or wood banging on other hard material, etc.
     
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  7. shak8

    shak8 Senior Member (Voting Rights)

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    I have moderate-sever fibro with a mild level of PEM (30-35% normal function), probably no ME/CFS diagnosis because I lack the immunologic symptoms such as swollen lymph glands and fever.

    Whatever the trigger for my pain-exhaustion, if it is bad enough, every sense is heightened and at least annoying, if not painful. Usually my triggers are pain from lifting more than 5 lbs (hard to avoid) or being out in the world than 90 minutes, but it can also be generated by emotional stress that worsens my baseline pain/exhaustion and if I'm pretty bad, I'm moving slowly because my brain is overloaded with stimuli, the whole mess is experienced as bizarre, my world-view is suddenly decimated into an alternative reality.

    Could it be that the added emotional stress of having your own parents induce the huge and prolonged noise assault caused the neural fatigue. It just all adds up and up until...

    I have always been a bit noise sensitive. It's worse now not only because I have tinnitus, but also, my pain-exhaustion levels have risen. I think I would have had some of your reactions if I had experienced what you did. I also have quick reactions and reflexes and was considered a "sensitive child", etc.

    Maybe it would help to read about how the ear generates signals and where they are processed and how that auditory area connects with other areas for pain perception. From what I read about hyperacusis, it is a symptom in many illnesses. I would like to know why.

    Soon after I was first diagnosed with fibro, I'd come into work and turn off the fluorescent lights. Not only the light, but the noise of them was painful. One day I could not speak coherently at work and another day, while reaching for a blood pressure cuff, I had extraordinary (my usual now) coat hanger pain. I'd have to lie down on my break at 8:30 am from exhaustion, an hour into my shift.

    I think anything weird and everything bizarre can happen with these maladies, just as in a dream crazy stuff happens. I don't know what theory comprises these manifestations. Brain over-stimulation leads to malfunction of various systems.
     
    Last edited: Jun 21, 2019
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  8. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

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    I get PERI which stands for Post Exertional Rheumatic Injury which is what I get instead of PEM. I'm 100% bedbound by it. I have sound to touch synesthesia which can be very painful. I'm sensitive only to certain types of sounds, for example I don't mind vacuum cleaners but can't stand laptop fans. I hate the sound of coughing. I have to wear earplugs 24/7. When I was in the general hospital in 2013 the sound of people talking during visiting hours was unbearable and I had to discharge myself early.
     
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  10. Mij

    Mij Senior Member (Voting Rights)

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    Ramsay:

    "(2) Neurological disturbance – an unpredictable state of central nervous system exhaustion following mental or physical exertion which may be delayed and require several days for recovery; an unique neuro-endocrine profile which differs from depression in that the hypothalamic/pituitary/adrenal response to stress is deficient; dysfunction of the autonomic and sensory nervous systems; cognitive problems."
     
  11. rvallee

    rvallee Senior Member (Voting Rights)

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    In this case between 2 and 3 weeks. That was a hard one.

    I often read that depression is accompanied by an internal dialogue that focuses of worthlessness, a voice that tells you you are a failure. Never had anything resembling that, but I'm not sure if it's just common or necessary. Never had any loss of motivation either. I'd even say the high motivation mixed in with being unable to do things was the most "depressive" thing I've ever felt. But it feels more like being super hungry and being locked up behind bars, unable to access food that is otherwise right in front of me. Way more frustration than anything else.

    I definitely mostly fit Ramsay's definition. Really looking forward to some classification.

    Speaking of the leg pains I'm trialing magnesium supplements and they seem to help but I want to test further. I wonder how that works out given the pain was closely related to the PEM/PENE. My hamstring tendons were so taut they were as hard as a tree branch and they are now back to being springy like normal.
     
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  12. Kitty

    Kitty Senior Member (Voting Rights)

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    This might be too simplistic for what you've experienced, but the reason for my physical pain after noise sensitivity is that it makes me tense. It's not all voluntary tension; yes, of course my muscles tense up as a response to something painful, but even if I consciously relax, much of the tension remains. I can't explain it easily, but it feels as if all the tiny fibres are individually tensed, rather than the muscle as a whole being contracted as a defensive reaction.

    I have an autism spectrum disorder, so I've always been prone to sensory overload. It might work differently in people who have ME but not ASD, though...
     
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  13. Amw66

    Amw66 Senior Member (Voting Rights)

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    I can relate to the idea of tension/ tenseness
    My daughter's muscles are generally tight- emotional/ sensory overstimulation can make some feel rock hard. She never fes as though there us a complete release if the tension.
    Her descriptions are

    It's like you yawn, your jaw extends but you never have the satisfaction of release of completing the yawn, it hangs, tense. That's a how it feels all over.
     
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